% Adam Ryczkowski % df1 % Tue Feb 20 19:37:40 2018
All questions names are matched between the databases. All patients are matched between the databases. There are 12 366 changes to the values to the existing patients and existing questions between the databases, which is 103% of all non-missing values.
ANTA-0002
No
to number in 62 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 43 questions: How many family members 1 had a history of ALS (q_100a_2
), How many family members 2 had a history of ALS (q_100b_2
), How many family members 3 had a history of ALS (q_100c_2
), How many family members 1 had a history of FTD (q_101a_2
), How many family members 2 had a history of FTD (q_101b_2
), How many family members 3 had a history of FTD (q_101c_2
), How many family members 1 had a history of Alzheimer disease (q_102a_2
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 18 questions: q_110d
, q_111
, q_123
, q_124
, q_125
, q_126
, q_127
, ...q_136
, q_137
, q_138
Yes
to number in 16 questions: q_149d
, q_149h
, q_152h
, q_156h
, q_16b
, q_24c
, q_25d
, ...q_28b
, q_28c
, q_29a
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) q_24
, q_26
, q_28
, q_30a
and q_99.c1
doesn't have defined level Yes
After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
), 5th timing (q_48e_t
) and 6th timing (q_48f_t
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) NA
removed in Creatinine level (or NF, NA, NR) (q_55a
), Creatinine lower range (q_55b
) and Creatinine upper range (q_55c
) Normal
replaces value Abnormal
in q_60
, q_61
and q_62
Niece maternal
added in Which family member 1 had a history of ALS (q_100a_1
), Which family member 1 had a history of FTD (q_101a_1
) and Which family member 1 had a history of Alzheimer disease (q_102a_1
) Niece paternal
added in Which family member 2 had a history of ALS (q_100b_1
), Which family member 2 had a history of FTD (q_101b_1
) and Which family member 2 had a history of Alzheimer disease (q_102b_1
) Niece unknown line
added in Which family member 3 had a history of ALS (q_100c_1
), Which family member 3 had a history of FTD (q_101c_1
) and Which family member 3 had a history of Alzheimer disease (q_102c_1
) Neurologist
added in Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
) and What specialist 2 observed the patient (q_154b_2
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
2
added in Number of children (q_110a
) and Order of specialist 2 that observed the patient (q_154a_2
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) General Practitioner
added in First specialist who observed the patient (q_148
) and What specialist 1 observed the patient (q_154b_1
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
q_16g
doesn't have defined level No
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) Distal and proximal
replaces value Proximal
in Predominant impairment (q_18c
) 1 Oro-facial
added in 1st region (q_48a_r
) 2b Right Upper limb – proximal
added in 2nd region (q_48b_r
) 3b Left Upper limb – proximal
added in 3rd region (q_48c_r
) 2a Right Upper limb – distal
added in 4th region (q_48d_r
) 3a Left Upper limb – distal
added in 5th region (q_48e_r
) 4b Right Lower limb – proximal
added in 6th region (q_48f_r
) 2017-11-14
added in ALSFRS(1) Acquisition date (q_51_1.date
) Speech combined with nonvocal communication
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Moderately excessive saliva; may have minimal drooling
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Dietary consistency changes
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Slow or sloppy; all words are legible
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Somewhat slow and clumsy, but no help needed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Total dependence
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Helpless
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) Walks with assistance
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Cannot do
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Occurs with >= 1 of the following: eating, bathing, dressing (ADL)
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) None
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) Intermittent use of BiPAP
to number in ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
Wt/wt (normal)
removed in q_97a
Father
added in Which family member 1 had died (q_106_1a
) Myocardial infarction
added in What cause of death of family member 1 (q_106_1b
) 90
added in Age of family member 1 at the moment of death (q_106_1d
) 5
added in Mother´s number of siblings (q_107b
) 3
added in Father´s number of siblings (q_108b
) "housewife"
removed in Main Ocupation (q_139
) "ANTA"
removed in centr_id
ANTA-0011
No
to number in 65 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 30 questions: Mother´s birth order (q_107a
), Siblings' birth order (q_110a1
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 15 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_135
, q_136
, q_138
Yes
to number in 13 questions: q_149a
, q_152d
, q_152e
, q_152f
, q_152h
, q_156h
, q_16a
, ...q_28a
, q_28b
, q_28c
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) q_137
, q_26
, q_28
, q_30a
and q_99.c1
doesn't have defined level Yes
2
added in Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
) and 5th timing (q_48e_t
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) Neurologist
added in Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
) and What specialist 2 observed the patient (q_154b_2
) q_16g
and q_24
doesn't have defined level No
No
replaces value Yes
in q_19
and q_63
NA
removed in Total Cholesterol lower range (q_56b
) and Triglycerides lower range (q_59b
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
other
added in What cause of death of family member 1 (q_106_1b
) and What cause of death of family member 2 (q_106_2b
) "unknown"
added in What other cause of death of family member 1 (q_106_1c
) and What other cause of death of family member 2 (q_106_2c
) 4
added in Father´s number of siblings (q_108b
) and Number of siblings (q_110a2
) Rural area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Upper and lower
replaces value Lower limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
4b Right Lower limb – proximal
added in 1st region (q_48a_r
) 5b Left Lower limb – proximal
added in 2nd region (q_48b_r
) 4a Right Lower limb – distal
added in 3rd region (q_48c_r
) 5a Left Lower limb – distal
added in 4th region (q_48d_r
) 1 Oro-facial
added in 5th region (q_48e_r
) Bulbar
replaces value Cervical
in Region2 (q_49b
) Bulbar
removed in Region3 (q_50a
) 2017-12-05
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Not all words are legible
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Can cut most foods, although clumsy and slow; some help needed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Total dependence
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Can turn alone or adjust sheets, but with great difficulty
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) Nonambulatory functional movement
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Needs assistance
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) Type II
replaces value Type I
in q_74
Yes
replaces value No
in q_91a
2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
A
added in Abnormal C9orf72 repeat-expansion (q_98_1
) Mutation found
added in TBK1 mutation (q_98_2a
) Father
added in Which family member 1 had died (q_106_1a
) 83
added in Age of family member 1 at the moment of death (q_106_1d
) Son
added in Which family member 2 had died (q_106_2a
) 56
added in Age of family member 2 at the moment of death (q_106_2d
) 9
added in Mother´s number of siblings (q_107b
) 3
added in Father´s birth order (q_108a
) "housewife"
removed in Main Ocupation (q_139
) General Practitioner
added in First specialist who observed the patient (q_148
) NA
to integer in Time gap between first-second specialist (q_151
) Cardiologist
added in What specialist 1 observed the patient (q_154b_1
) "ANTA"
removed in centr_id
ANTA-0015
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) No
to number in 57 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118c
, q_119a
, q_119b
, ...q_38.1b
, q_38.2a
, q_38.2b
1
added in 31 questions: How many family members 1 had a history of ALS (q_100a_2
), How many family members 1 had a history of Parkinson disease (q_103a_2
), Mother´s birth order (q_107a
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) Yes
to number in 21 questions: q_118b
, q_152d
, q_152e
, q_152f
, q_152h
, q_156h
, q_16a
, ...q_28c
, q_29a
, q_29b
No
removed in 18 questions: q_123
, q_124
, q_125
, q_127
, q_128
, q_129
, q_130
, ...q_145
, q_146
, q_147
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) 2
added in Siblings' birth order (q_110a1
), Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Tumor (q_65a_2
), Spinal cord MRI Thoracic - Tumor (q_65b_2
) and Spinal cord MRI Lumbo-sacral - Tumor (q_65c_2
) q_24
, q_26
, q_28
and q_99.c1
doesn't have defined level Yes
After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
) and 5th timing (q_48e_t
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
) and Did specialist 1 made diagnosis (q_154d_1
) q_16g
and q_30a
doesn't have defined level No
None
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
Country towns– 1000-5 000
removed in Place of living (q_143
) and Place of living (q_144
) Rural area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) NA
removed in Time gap between first-second specialist (q_151
) and Time gap between first medical observation and diagnosis (q_155
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Upper and lower
replaces value Lower limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
4a Right Lower limb – distal
added in 1st region (q_48a_r
) 2a Right Upper limb – distal
added in 2nd region (q_48b_r
) 5a Left Lower limb – distal
added in 3rd region (q_48c_r
) 3a Left Upper limb – distal
added in 4th region (q_48d_r
) 1 Oro-facial
added in 5th region (q_48e_r
) 2017-12-20
added in ALSFRS(1) Acquisition date (q_51_1.date
) Loss of useful speech
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Dietary consistency changes
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Unable to grip pen
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Needs to be fed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Total dependence
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Helpless
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) No purposeful leg movement
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Cannot do
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Occurs with >= 1 of the following: eating, bathing, dressing (ADL)
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Mutation found
removed in q_97a
"SNP"
removed in SOD1 mutation type (q_97b
) Sister
added in Which family member 1 had a history of ALS (q_100a_1
) Uncle maternal
added in Which family member 1 had a history of Parkinson disease (q_103a_1
) Father
added in Which family member 1 had died (q_106_1a
) other
added in What cause of death of family member 1 (q_106_1b
) "UNKNOWN"
added in What other cause of death of family member 1 (q_106_1c
) 60
added in Age of family member 1 at the moment of death (q_106_1d
) 6
added in Mother´s number of siblings (q_107b
) 3
added in Father´s birth order (q_108a
) 7
added in Father´s number of siblings (q_108b
) 9
added in Number of siblings (q_110a2
) "officer"
removed in Main Ocupation (q_139
) "farmer"
removed in Second Occupation (q_141
) Rehabilitation specialist
added in What specialist 1 observed the patient (q_154b_1
) Neurologist
added in What specialist 2 observed the patient (q_154b_2
) Yes
added in Did specialist 2 made diagnosis (q_154d_2
) "ANTA"
removed in centr_id
ANTA-0016
No
to number in 71 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 29 questions: Mother´s birth order (q_107a
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 19 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_145
, q_146
, q_147
Yes
to number in q_149a
, q_156h
, q_16a
, q_26a
, q_27a
, q_28a
and q_28b
After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
), 5th timing (q_48e_t
), 6th timing (q_48f_t
), 7th timing (q_48g_t
) and 8th timing (q_48h_t
) 2
added in Number of children (q_110a
), Siblings' birth order (q_110a1
), Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Tumor (q_65a_2
), Spinal cord MRI Thoracic - Tumor (q_65b_2
) and Spinal cord MRI Lumbo-sacral - Tumor (q_65c_2
) 0
added in Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) q_26
, q_28
, q_30a
and q_99.c1
doesn't have defined level Yes
None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
) and Did specialist 1 made diagnosis (q_154d_1
) Neurologist
added in Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
) and What specialist 2 observed the patient (q_154b_2
) q_16g
and q_24
doesn't have defined level No
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
Rural area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Internal Medicine
added in First specialist who observed the patient (q_148
) and What specialist 1 observed the patient (q_154b_1
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
3a Left Upper limb – distal
added in 1st region (q_48a_r
) 2a Right Upper limb – distal
added in 2nd region (q_48b_r
) 3b Left Upper limb – proximal
added in 3rd region (q_48c_r
) 2b Right Upper limb – proximal
added in 4th region (q_48d_r
) 7 Neck
added in 5th region (q_48e_r
) 5b Left Lower limb – proximal
added in 6th region (q_48f_r
) 4b Right Lower limb – proximal
added in 7th region (q_48g_r
) 1 Oro-facial
added in 8th region (q_48h_r
) 2018-01-11
added in ALSFRS(1) Acquisition date (q_51_1.date
) Detectable speech disturbances
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Unable to grip pen
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Needs to be fed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Total dependence
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Can turn alone or adjust sheets, but with great difficulty
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) Early ambulation difficulties
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Mild unsteadiness or fatigue
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
Father
added in Which family member 1 had died (q_106_1a
) other
added in What cause of death of family member 1 (q_106_1b
) "SVA"
added in What other cause of death of family member 1 (q_106_1c
) 70
added in Age of family member 1 at the moment of death (q_106_1d
) 7
added in Mother´s number of siblings (q_107b
) 4
added in Father´s birth order (q_108a
) 12
added in Father´s number of siblings (q_108b
) 5
added in Number of siblings (q_110a2
) "farmer"
removed in Main Ocupation (q_139
) Yes
added in Did specialist 2 made diagnosis (q_154d_2
) "ANTA"
removed in centr_id
ANTA-0017
No
to number in 65 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 28 questions: Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Tumor (q_64_2
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), Brain MRI - NA (q_64_7
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 16 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
Yes
to number in 13 questions: q_149b
, q_152d
, q_152e
, q_152h
, q_156h
, q_16a
, q_16c
, ...q_28a
, q_29a
, q_29b
2
added in Mother´s birth order (q_107a
), Father´s birth order (q_108a
), Father´s number of siblings (q_108b
), Siblings' birth order (q_110a1
), Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Normal (q_64_1
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) 0
added in Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
), 5th timing (q_48e_t
), 6th timing (q_48f_t
) and 8th timing (q_48h_t
) q_26
, q_28
, q_30a
, q_87a
and q_99.c1
doesn't have defined level Yes
No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
), What specialist 1 observed the patient (q_154b_1
) and What specialist 2 observed the patient (q_154b_2
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
), ALSFRS(1) 4. Handwriting (q_51_1.4
) and ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) q_16g
and q_24
doesn't have defined level No
None
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
2a Right Upper limb – distal
added in 1st region (q_48a_r
) 2b Right Upper limb – proximal
added in 2nd region (q_48b_r
) 3b Left Upper limb – proximal
added in 3rd region (q_48c_r
) 3a Left Upper limb – distal
added in 4th region (q_48d_r
) 5a Left Lower limb – distal
added in 5th region (q_48e_r
) 4a Right Lower limb – distal
added in 6th region (q_48f_r
) 6 Respiratory symptoms
added in 7th region (q_48g_r
) Same time
added in 7th timing (q_48g_t
) 1 Oro-facial
added in 8th region (q_48h_r
) Thoracic
replaces value Bulbar
in Region3 (q_50a
) 2018-01-11
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Early eating problems - occasional choking
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Needs attendant for self-care
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Can initiate, but not turn or adjust sheets alone
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) Walks with assistance
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Cannot do
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Occurs when walking
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
1976
replaces value NA
in Year of initiation of smoking (q_88b
) q_88d
) doesn't allow for tagged NA 2
2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Mutation found
removed in q_97a
"SNP"
removed in SOD1 mutation type (q_97b
) Father
added in Which family member 1 had died (q_106_1a
) other
added in What cause of death of family member 1 (q_106_1b
) "CVA"
added in What other cause of death of family member 1 (q_106_1c
) 86
added in Age of family member 1 at the moment of death (q_106_1d
) 4
added in Mother´s number of siblings (q_107b
) 6
added in Number of siblings (q_110a2
) "shepherd"
removed in Main Ocupation (q_139
) Rural area
to number in Lives in Rural Area/Urban (q_143a
) Urban area
to number in Lives in Rural Area/Urban (q_144a
) "ANTA"
removed in centr_id
ANTA-0018
No
to number in 65 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 28 questions: Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Tumor (q_64_2
), Brain MRI - Stroke (q_64_3
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), Brain MRI - NA (q_64_7
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 14 questions: q_124
, q_125
, q_126
, q_127
, q_129
, q_130
, q_131
, ...q_136
, q_137
, q_138
Yes
to number in 13 questions: q_149g
, q_152e
, q_152g
, q_152h
, q_156d
, q_156h
, q_16a
, ...q_29a
, q_29b
, q_29c
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) 2
added in Mother´s birth order (q_107a
), Father´s birth order (q_108a
), Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Multiple Sclerosis (q_64_4
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
), 5th timing (q_48e_t
), 6th timing (q_48f_t
) and 7th timing (q_48g_t
) q_123
, q_128
, q_26
, q_28
and q_99.c1
doesn't have defined level Yes
Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
), What specialist 1 observed the patient (q_154b_1
) and What specialist 2 observed the patient (q_154b_2
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) q_16g
, q_24
and q_30a
doesn't have defined level No
Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
), ALSFRS(1) 4. Handwriting (q_51_1.4
) and ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) None
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) NA
removed in LDL Cholesterol lower range (q_58b
) and Triglycerides lower range (q_59b
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
other
added in What cause of death of family member 1 (q_106_1b
) and What cause of death of family member 2 (q_106_2b
) "Unknown"
added in What other cause of death of family member 1 (q_106_1c
) and What other cause of death of family member 2 (q_106_2c
) 3
added in Mother´s number of siblings (q_107b
) and Father´s number of siblings (q_108b
) Rural area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) "ANTC0009"
added in Control subject code (q_3b
) q_7
) doesn't have defined level Caucassian
Upper and lower
replaces value Lower limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
4a Right Lower limb – distal
added in 1st region (q_48a_r
) 4b Right Lower limb – proximal
added in 2nd region (q_48b_r
) 5a Left Lower limb – distal
added in 3rd region (q_48c_r
) 5b Left Lower limb – proximal
added in 4th region (q_48d_r
) 2a Right Upper limb – distal
added in 5th region (q_48e_r
) 3a Left Upper limb – distal
added in 6th region (q_48f_r
) 1 Oro-facial
added in 7th region (q_48g_r
) 2018-01-11
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Normal function
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Helpless
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) No purposeful leg movement
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Cannot do
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Significant difficulty, considering using mechanical respiratory support
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
Type II
replaces value Type I
in q_74
2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Mutation found
removed in q_97a
"SNP"
removed in SOD1 mutation type (q_97b
) Father
added in Which family member 1 had died (q_106_1a
) 58
added in Age of family member 1 at the moment of death (q_106_1d
) Son
added in Which family member 2 had died (q_106_2a
) 53
added in Age of family member 2 at the moment of death (q_106_2d
) 5
added in Number of children (q_110a
) 6
added in Siblings' birth order (q_110a1
) 9
added in Number of siblings (q_110a2
) "farmer"
removed in Main Ocupation (q_139
) "ANTA"
removed in centr_id
ANTA-0022
No
to number in 71 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 29 questions: Mother´s birth order (q_107a
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 13 questions: q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, q_130
, ...q_135
, q_136
, q_138
Yes
to number in q_121a
, q_121b
, q_16b
, q_24a
, q_24c
, q_25a
and q_26a
q_123
, q_132
, q_137
, q_24
, q_26
, q_30a
and q_99.c1
doesn't have defined level Yes
2
added in Mother´s number of siblings (q_107b
), Father´s birth order (q_108a
), Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) 0
added in Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
), 5th timing (q_48e_t
) and 6th timing (q_48f_t
) No
added in Head/Neck trauma in the last 5 years (q_115
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) Neurologist
added in Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
) and What specialist 2 observed the patient (q_154b_2
) q_16g
and q_28
doesn't have defined level No
Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) General Practitioner
added in First specialist who observed the patient (q_148
) and What specialist 1 observed the patient (q_154b_1
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
1 Oro-facial
added in 1st region (q_48a_r
) 3a Left Upper limb – distal
added in 2nd region (q_48b_r
) 3b Left Upper limb – proximal
added in 3rd region (q_48c_r
) 5a Left Lower limb – distal
added in 4th region (q_48d_r
) 2a Right Upper limb – distal
added in 5th region (q_48e_r
) 4a Right Lower limb – distal
added in 6th region (q_48f_r
) 2016-03-11
added in ALSFRS(1) Acquisition date (q_51_1.date
) Detectable speech disturbances
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Slight but definite excess of saliva in mouth; may have nightime drooling
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Dietary consistency changes
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Unable to grip pen
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Needs to be fed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Total dependence
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Helpless
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) No purposeful leg movement
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Cannot do
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Significant difficulty, considering using mechanical respiratory support
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) Needs extra pillows in order to sleep (>2)
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) Intermittent use of BiPAP
to number in ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
2005
replaces value NA
in Year of initiation of smoking (q_88b
) q_88d
) doesn't allow for tagged NA 2
Yes
replaces value No
in q_89a
"Lithium"
added in Drug(s) used in psychiatric medication (q_89b
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) "Gabapentine"
replaces value "gabapentine"
in Antiepileptc's name (q_92b
) Wt/wt (normal)
removed in q_97a
Son
added in Which family member 1 had died (q_106_1a
) other
added in What cause of death of family member 1 (q_106_1b
) "Unknown"
added in What other cause of death of family member 1 (q_106_1c
) 60
added in Age of family member 1 at the moment of death (q_106_1d
) 9
added in Father´s number of siblings (q_108b
) 7
added in Siblings' birth order (q_110a1
) 8
added in Number of siblings (q_110a2
) Head
added in Head/Neck trauma > 5 years (q_116
) "tourism"
removed in Main Ocupation (q_139
) "ANTA"
removed in centr_id
JENA0044
No
to number in 62 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 31 questions: Father´s birth order (q_108a
), Father´s number of siblings (q_108b
), Siblings' birth order (q_110a1
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Tumor (q_64_2
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) Yes
to number in 16 questions: q_122b
, q_156a
, q_156b
, q_156c
, q_156d
, q_156e
, q_156f
, ...q_27a
, q_28c
, q_29a
2
added in Number of siblings (q_110a2
), How long vigorous sport activity 1 (q_112b_1c
), How long vigorous sport activity 2 (q_112b_2c
), Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Normal (q_64_1
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) 0
added in Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) mmol/l
added in Total Cholesterol unit (q_56d
), HDL Cholesterol unit (q_57d
), LDL Cholesterol unit (q_58d
) and Triglycerides unit (q_59d
) No
removed in q_110d
, q_145
, q_146
and q_147
No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) Neurologist
added in Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
), What specialist 2 observed the patient (q_154b_2
) and What specialist 3 observed the patient (q_154b_3
) Same time
added in 2nd timing (q_48b_t
), 4th timing (q_48d_t
) and 6th timing (q_48f_t
) After
added in 3rd timing (q_48c_t
), 5th timing (q_48e_t
) and 7th timing (q_48g_t
) "No"
removed in Second Occupation (q_141
), Second Occupation (q_142
) and Side effects of Riluzole (q_91c
) None
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) 4
added in Mother´s birth order (q_107a
) and Mother´s number of siblings (q_107b
) 3
added in Number of children (q_110a
) and Order of specialist 3 that observed the patient (q_154a_3
) "heating engineer"
removed in Main Ocupation (q_139
) and Main Ocupation (q_140
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Orthopaedist
added in First specialist who observed the patient (q_148
) and What specialist 1 observed the patient (q_154b_1
) Jena
added in Medical facility (facility_id
) B Stubbendorf
added in Physician recording the data (person_id
) Not related
added in q_3a
q_7
) doesn't have defined level Caucassian
q_16g
doesn't have defined level No
Upper and lower
replaces value Lower limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
Upper Limbs
replaces value No
in Sensory changes (q_39
) Positive
added in q_43
4a Right Lower limb – distal
added in 1st region (q_48a_r
) 5a Left Lower limb – distal
added in 2nd region (q_48b_r
) 4b Right Lower limb – proximal
added in 3rd region (q_48c_r
) 5b Left Lower limb – proximal
added in 4th region (q_48d_r
) 2a Right Upper limb – distal
added in 5th region (q_48e_r
) 3a Left Upper limb – distal
added in 6th region (q_48f_r
) 1 Oro-facial
added in 7th region (q_48g_r
) 2017-05-04
added in ALSFRS(1) Acquisition date (q_51_1.date
) Detectable speech disturbances
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Slow or sloppy; all words are legible
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Can cut most foods, although clumsy and slow; some help needed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Independent and complete self-care with effort of decreased efficiency
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Somewhat slow and clumsy, but no help needed
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) Walks with assistance
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Needs assistance
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Occurs with >= 1 of the following: eating, bathing, dressing (ADL)
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) µmol/l·s
added in CK unit (q_53d
) g/l
added in Albumin unit (q_54d
) µmol/l
added in Creatinine unit (q_55d
) "Budesonid"
replaces value "Budesonid Spray"
in Steroid's name (q_95b
) Wt/wt (normal)
added in q_97a
A
added in Abnormal C9orf72 repeat-expansion (q_98_1
) q_99.c1
doesn't have defined level Yes
No
replaces value Yes
in q_111
Cycling
added in Type of vigorous sport activity 1 (q_112b_1a
) Football
added in Type of vigorous sport activity 2 (q_112b_2a
) NA
to integer in Time gap between first-second specialist (q_151
) Yes
added in Did specialist 3 made diagnosis (q_154d_3
) "JENA"
removed in centr_id
105
replaces value 286
in x
ANTA-0001
No
to number in 68 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 39 questions: Mother´s birth order (q_107a
), Mother´s number of siblings (q_107b
), Father´s birth order (q_108a
), Father´s number of siblings (q_108b
), Number of children (q_110a
), Siblings' birth order (q_110a1
), Number of siblings (q_110a2
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) NA
removed in 26 questions: Time gap between first-second specialist (q_151
), CK level (or NF, NA, NR) (q_53a
), CK lower range (q_53b
), CK upper range (q_53c
), Albumin level (or NF, NA, NR) (q_54a
), Albumin lower range (q_54b
), Albumin upper range (q_54c
), ...VC (% predicted values) (q_67
), SNIP – absolute value (cmH2O) (q_70
), Nocturnal oximetry - mean value (%) (q_71
) No
removed in 20 questions: q_110d
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_145
, q_146
, q_147
Yes
to number in q_149c
, q_152e
, q_152h
, q_156h
, q_16a
, q_26a
, q_27a
, q_29a
, q_29b
and q_29c
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) q_26
, q_28
, q_30a
and q_99.c1
doesn't have defined level Yes
After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
) and 5th timing (q_48e_t
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) q_16g
and q_24
doesn't have defined level No
None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) and ALSFRS(1) 11. Orthopnea (q_51_1.11
) Normal
replaces value Abnormal
in q_61
and q_62
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
Large town– > 100 000
removed in Place of living (q_143
) and Place of living (q_144
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Neurologist
added in What specialist 1 observed the patient (q_154b_1
) and What specialist 2 observed the patient (q_154b_2
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
2015-12-01
removed in Date of Invasive ventilation (q_14
) Upper and lower
replaces value Lower limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
5a Left Lower limb – distal
added in 1st region (q_48a_r
) 4a Right Lower limb – distal
added in 2nd region (q_48b_r
) 2a Right Upper limb – distal
added in 3rd region (q_48c_r
) 3a Left Upper limb – distal
added in 4th region (q_48d_r
) 7 Neck
added in 5th region (q_48e_r
) Lumbo-sacral
replaces value Cervical
in Region1 (q_49a
) Cervical
replaces value Lumbo-sacral
in Region2 (q_49b
) Bulbar
replaces value Thoracic
in Region3 (q_50a
) 2017-10-28
added in ALSFRS(1) Acquisition date (q_51_1.date
) Detectable speech disturbances
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Unable to grip pen
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Needs to be fed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Total dependence
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Helpless
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) No purposeful leg movement
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Cannot do
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Invasive mechanical ventilation by intubation or tracheostomy
to number in ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
2013-01-01
replaces value 1905-07-05
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
"marketing staff"
removed in Main Ocupation (q_139
) "business manger"
removed in Main Ocupation (q_140
) 2
added in Order of specialist 2 that observed the patient (q_154a_2
) "ANTA"
removed in centr_id
ANTA-0003
NA
added in 90 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) No
to number in 67 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
No
removed in 17 questions: q_111
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_136
, q_137
, q_138
Yes
to number in 11 questions: q_152d
, q_152h
, q_16a
, q_26a
, q_26b
, q_26c
, q_27a
, ...q_28b
, q_28c
, q_29a
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) q_26
, q_28
, q_30a
and q_99.c1
doesn't have defined level Yes
After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
) and 5th timing (q_48e_t
) NA
removed in Creatinine level (or NF, NA, NR) (q_55a
), Creatinine lower range (q_55b
), Creatinine upper range (q_55c
) and SNIP – absolute value (cmH2O) (q_70
) 3
added in Father´s birth order (q_108a
), Father´s number of siblings (q_108b
), Number of children (q_110a
) and Siblings' birth order (q_110a1
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) Neurologist
added in Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
) and What specialist 2 observed the patient (q_154b_2
) q_16g
and q_24
doesn't have defined level No
Abnormal
removed in q_61
and q_62
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
1
added in Mother´s birth order (q_107a
) and Order of specialist 1 that observed the patient (q_154a_1
) 2
added in Mother´s number of siblings (q_107b
) and Order of specialist 2 that observed the patient (q_154a_2
) Large town– > 100 000
added in Place of living (q_143
) and Place of living (q_144
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Internal Medicine
added in First specialist who observed the patient (q_148
) and What specialist 1 observed the patient (q_154b_1
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
3a Left Upper limb – distal
added in 1st region (q_48a_r
) 2a Right Upper limb – distal
added in 2nd region (q_48b_r
) 5a Left Lower limb – distal
added in 3rd region (q_48c_r
) 4a Right Lower limb – distal
added in 4th region (q_48d_r
) 7 Neck
added in 5th region (q_48e_r
) 2017-11-14
added in ALSFRS(1) Acquisition date (q_51_1.date
) Loss of useful speech
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Marked excess of saliva with some drooling
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Needs supplemental tube feeding
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Unable to grip pen
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Needs to be fed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Total dependence
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Helpless
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) No purposeful leg movement
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Cannot do
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) Normal
removed in q_60
No
replaces value Yes
in q_63
2007-01-01
replaces value 1905-06-29
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
7
added in Number of siblings (q_110a2
) "farmer"
removed in Main Ocupation (q_139
) "ANTA"
removed in centr_id
ANTA-0004
No
to number in 59 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 29 questions: Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), Brain MRI - NA (q_64_7
), ...Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
), Mean number of packs/day (q_88e
) Yes
to number in 19 questions: q_149d
, q_149e
, q_149h
, q_156d
, q_156e
, q_156h
, q_16a
, ...q_28a
, q_28b
, q_28c
No
removed in 18 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_145
, q_146
, q_147
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
) and ALS depression inventory lower range (q_47c
) 2
added in Number of children (q_110a
), Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Tumor (q_65a_2
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) q_133
, q_24
, q_26
, q_28
and q_99.c1
doesn't have defined level Yes
mg/dl
added in Creatinine unit (q_55d
), Total Cholesterol unit (q_56d
), HDL Cholesterol unit (q_57d
), LDL Cholesterol unit (q_58d
) and Triglycerides unit (q_59d
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
), What specialist 1 observed the patient (q_154b_1
) and What specialist 2 observed the patient (q_154b_2
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
) and 4th timing (q_48d_t
) 3
added in Father´s birth order (q_108a
), Father´s number of siblings (q_108b
) and Siblings' birth order (q_110a1
) q_16g
and q_30a
doesn't have defined level No
4
added in Mother´s birth order (q_107a
) and Mother´s number of siblings (q_107b
) "carpenter"
removed in Main Ocupation (q_139
) and Second Occupation (q_141
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
2017-10-01
removed in Date of Death (q_15
) Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
3a Left Upper limb – distal
added in 1st region (q_48a_r
) 3b Left Upper limb – proximal
added in 2nd region (q_48b_r
) 2b Right Upper limb – proximal
added in 3rd region (q_48c_r
) 4a Right Lower limb – distal
added in 4th region (q_48d_r
) Lumbo-sacral
removed in Region3 (q_50a
) 2017-11-22
added in ALSFRS(1) Acquisition date (q_51_1.date
) Speech combined with nonvocal communication
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Needs supplemental tube feeding
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Unable to grip pen
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Needs to be fed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Total dependence
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Helpless
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) Nonambulatory functional movement
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Cannot do
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Occurs with >= 1 of the following: eating, bathing, dressing (ADL)
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) Needs extra pillows in order to sleep (>2)
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) None
to number in ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) U/l
added in CK unit (q_53d
) g/dl
added in Albumin unit (q_54d
) No
replaces value Yes
in q_63
2014
replaces value NA
in Year of initiation of smoking (q_88b
) q_88d
) doesn't allow for tagged NA 2
2016-01-01
replaces value 1905-07-08
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
6
added in Number of siblings (q_110a2
) Yes
removed in q_111
"ANTA"
removed in centr_id
ANTA-0005
No
to number in 73 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 29 questions: Siblings' birth order (q_110a1
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 14 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_135
, q_136
, q_138
2
added in How many family members 1 had a history of Alzheimer disease (q_102a_2
), Number of siblings (q_110a2
), Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Tumor (q_65a_2
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) 0
added in Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
), 5th timing (q_48e_t
), 6th timing (q_48f_t
) and 7th timing (q_48g_t
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
), What specialist 1 observed the patient (q_154b_1
), What specialist 2 observed the patient (q_154b_2
) and What specialist 3 observed the patient (q_154b_3
) Yes
to number in q_149e
, q_156h
, q_16a
, q_27a
and q_27b
q_16g
, q_24
, q_28
and q_30a
doesn't have defined level No
q_133
, q_137
, q_26
and q_99.c1
doesn't have defined level Yes
No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
), ALSFRS(1) 8. Walking (q_51_1.8
) and ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
), HDL Cholesterol level (or NF, NA, NR) (q_57a
) and HDL Cholesterol lower range (q_57b
) 3a Left Upper limb – distal
added in 1st region (q_48a_r
) and 3rd region (q_48c_r
) 3b Left Upper limb – proximal
added in 2nd region (q_48b_r
) and 4th region (q_48d_r
) Somewhat slow and clumsy, but no help needed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) and ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) 7
added in Mother´s number of siblings (q_107b
) and Father´s number of siblings (q_108b
) 3
added in Father´s birth order (q_108a
) and Order of specialist 3 that observed the patient (q_154a_3
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
4a Right Lower limb – distal
added in 5th region (q_48e_r
) 5a Left Lower limb – distal
added in 6th region (q_48f_r
) 6 Respiratory symptoms
added in 7th region (q_48g_r
) q_49b
) doesn't have defined level Thoracic
2017-11-22
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Slow or sloppy; all words are legible
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Total dependence
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) U/l
added in CK unit (q_53d
) NA
removed in LDL Cholesterol lower range (q_58b
) No
replaces value Yes
in q_63
1999
replaces value NA
in Year of initiation of smoking (q_88b
) 2015
replaces value NA
in Year of interruption of smoking (q_88d
) 2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
A
added in Abnormal C9orf72 repeat-expansion (q_98_1
) Aunt maternal
added in Which family member 1 had a history of Alzheimer disease (q_102a_1
) 5
added in Mother´s birth order (q_107a
) "military officer"
removed in Main Ocupation (q_139
) "sergeant"
removed in Main Ocupation (q_140
) Yes
added in Did specialist 3 made diagnosis (q_154d_3
) "ANTA"
removed in centr_id
ANTA-0006
No
to number in 69 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 31 questions: Mother´s birth order (q_107a
), Father´s birth order (q_108a
), Siblings' birth order (q_110a1
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 17 questions: q_110d
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_136
, q_137
, q_138
Yes
to number in q_149b
, q_149e
, q_149h
, q_152h
, q_156h
, q_16a
, q_26a
, q_27a
and q_28a
0
added in Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
), 5th timing (q_48e_t
), 6th timing (q_48f_t
) and 7th timing (q_48g_t
) 2
added in Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Tumor (q_65a_2
), Spinal cord MRI Thoracic - Tumor (q_65b_2
) and Spinal cord MRI Lumbo-sacral - Tumor (q_65c_2
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
), What specialist 1 observed the patient (q_154b_1
) and What specialist 2 observed the patient (q_154b_2
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) q_16g
, q_24
and q_30a
doesn't have defined level No
q_26
, q_28
and q_99.c1
doesn't have defined level Yes
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
3
added in Mother´s number of siblings (q_107b
) and Number of siblings (q_110a2
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
3a Left Upper limb – distal
added in 1st region (q_48a_r
) 2a Right Upper limb – distal
added in 2nd region (q_48b_r
) 3b Left Upper limb – proximal
added in 3rd region (q_48c_r
) 2b Right Upper limb – proximal
added in 4th region (q_48d_r
) 5a Left Lower limb – distal
added in 5th region (q_48e_r
) 5b Left Lower limb – proximal
added in 6th region (q_48f_r
) 6 Respiratory symptoms
added in 7th region (q_48g_r
) Thoracic
replaces value Bulbar
in Region3 (q_50a
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Unable to grip pen
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Needs to be fed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Total dependence
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Helpless
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) Walks with assistance
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Needs assistance
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Occurs with >= 1 of the following: eating, bathing, dressing (ADL)
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) Needs extra pillows in order to sleep (>2)
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) None
to number in ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
4
added in Father´s number of siblings (q_108b
) "driver"
removed in Main Ocupation (q_139
) "repairman"
removed in Second Occupation (q_141
) Large town– > 100 000
added in Place of living (q_143
) "ANTA"
removed in centr_id
ANTA-0008
No
to number in 61 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 28 questions: Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), Brain MRI - NA (q_64_7
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) Yes
to number in 17 questions: q_122a
, q_149a
, q_149d
, q_149e
, q_149f
, q_149g
, q_149h
, ...q_29a
, q_29b
, q_29c
No
removed in 17 questions: q_110d
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_136
, q_137
, q_138
2
added in Mother´s birth order (q_107a
), Father´s birth order (q_108a
), Father´s number of siblings (q_108b
), Siblings' birth order (q_110a1
), Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Tumor (q_65a_2
), Spinal cord MRI Thoracic - Tumor (q_65b_2
) and Spinal cord MRI Lumbo-sacral - Tumor (q_65c_2
) 0
added in Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
), 5th timing (q_48e_t
) and 6th timing (q_48f_t
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
), ALSFRS(1) 4. Handwriting (q_51_1.4
), ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) and ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
) and What specialist 2 observed the patient (q_154b_2
) q_16g
, q_24
and q_30a
doesn't have defined level No
q_26
, q_28
and q_99.c1
doesn't have defined level Yes
None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
) and Did specialist 1 made diagnosis (q_154d_1
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
other
added in What cause of death of family member 1 (q_106_1b
) and What cause of death of family member 2 (q_106_2b
) "Unknown"
added in What other cause of death of family member 1 (q_106_1c
) and What other cause of death of family member 2 (q_106_2c
) 6
added in Mother´s number of siblings (q_107b
) and Number of siblings (q_110a2
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Upper and lower
replaces value Lower limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
5a Left Lower limb – distal
added in 1st region (q_48a_r
) 5b Left Lower limb – proximal
added in 2nd region (q_48b_r
) 4a Right Lower limb – distal
added in 3rd region (q_48c_r
) 4b Right Lower limb – proximal
added in 4th region (q_48d_r
) 2b Right Upper limb – proximal
added in 5th region (q_48e_r
) 3b Left Upper limb – proximal
added in 6th region (q_48f_r
) 2017-11-30
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Normal function
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Walks with assistance
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Mild unsteadiness or fatigue
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) Yes
replaces value No
in q_63
2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
Pending
added in Abnormal C9orf72 repeat-expansion (q_98_1
) Father
added in Which family member 1 had died (q_106_1a
) 62
added in Age of family member 1 at the moment of death (q_106_1d
) Son
added in Which family member 2 had died (q_106_2a
) 65
added in Age of family member 2 at the moment of death (q_106_2d
) "housewife"
removed in Main Ocupation (q_139
) Cardiologist
added in What specialist 1 observed the patient (q_154b_1
) Yes
added in Did specialist 2 made diagnosis (q_154d_2
) "ANTA"
removed in centr_id
ANTA-0012
No
to number in 64 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 51 questions: Other type of specialist 7 that observed the patient (q_154c_7
), ALSFRS(2) 1. Speech (q_51_2.1
), ALSFRS(2) 10. Dyspnea (q_51_2.10
), ALSFRS(2) 11. Orthopnea (q_51_2.11
), ALSFRS(2) 12. Respiratory insufficiency (q_51_2.12
), ALSFRS(2) 2. Salivation (q_51_2.2
), ALSFRS(2) 3. Swallowing (q_51_2.3
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 35 questions: Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), Regular specific diet - Paleo (High-protein, high-fat, low-carbohydrate) (q_114h
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 16 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
Yes
to number in 14 questions: q_149d
, q_149e
, q_149f
, q_149g
, q_149h
, q_152h
, q_156h
, ...q_27c
, q_29a
, q_29c
2
added in Mother´s birth order (q_107a
), Father´s birth order (q_108a
), Regular specific diet - No (q_114a
), Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - NA (q_65a_8
), Spinal cord MRI Thoracic - Tumor (q_65b_2
) and Spinal cord MRI Lumbo-sacral - Tumor (q_65c_2
) 0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
), 5th timing (q_48e_t
), 6th timing (q_48f_t
) and 7th timing (q_48g_t
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
), Did specialist 2 made diagnosis (q_154d_2
), Did specialist 3 made diagnosis (q_154d_3
) and Did specialist 4 made diagnosis (q_154d_4
) Neurologist
added in Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
), What specialist 2 observed the patient (q_154b_2
), What specialist 3 observed the patient (q_154b_3
) and What specialist 4 observed the patient (q_154b_4
) q_26
, q_28
, q_30a
and q_99.c1
doesn't have defined level Yes
NA
removed in Total Cholesterol lower range (q_56b
), LDL Cholesterol lower range (q_58b
) and Triglycerides lower range (q_59b
) q_16g
and q_24
doesn't have defined level No
Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) and ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) No
replaces value Yes
in q_63
and q_94a
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
4
added in Mother´s number of siblings (q_107b
) and Order of specialist 4 that observed the patient (q_154a_4
) 5
added in Father´s number of siblings (q_108b
) and Number of siblings (q_110a2
) 3
added in Siblings' birth order (q_110a1
) and Order of specialist 3 that observed the patient (q_154a_3
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Internal Medicine
added in First specialist who observed the patient (q_148
) and What specialist 1 observed the patient (q_154b_1
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Upper and lower
replaces value Lower limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
4a Right Lower limb – distal
added in 1st region (q_48a_r
) 5a Left Lower limb – distal
added in 2nd region (q_48b_r
) 2a Right Upper limb – distal
added in 3rd region (q_48c_r
) 3a Left Upper limb – distal
added in 4th region (q_48d_r
) 1 Oro-facial
added in 5th region (q_48e_r
) 8 Thoracic/abdomen
added in 6th region (q_48f_r
) 6 Respiratory symptoms
added in 7th region (q_48g_r
) 2017-12-19
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Unable to grip pen
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Normal function
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Helpless
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) No purposeful leg movement
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Cannot do
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Significant difficulty, considering using mechanical respiratory support
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) Unable to sleep
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) Invasive mechanical ventilation by intubation or tracheostomy
to number in ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) 2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
Brother
added in Which family member 1 had a history of other severe disease (q_105_1a
) Cancer prostate
added in What severe disease family member 1 had (q_105_1b
) Yes
removed in q_111
"housewife"
removed in Main Ocupation (q_139
) "ANTA"
removed in centr_id
ANTA-0014
No
to number in 62 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 30 questions: How many family members 1 had a history of Alzheimer disease (q_102a_2
), Mother´s birth order (q_107a
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 19 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_145
, q_146
, q_147
Yes
to number in 16 questions: q_149d
, q_149e
, q_152h
, q_156h
, q_16a
, q_24c
, q_26a
, ...q_28c
, q_29a
, q_29b
2
added in Number of children (q_110a
), Siblings' birth order (q_110a1
), Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Tumor (q_65a_2
), Spinal cord MRI Thoracic - Tumor (q_65b_2
) and Spinal cord MRI Lumbo-sacral - Tumor (q_65c_2
) 0
added in Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
), 5th timing (q_48e_t
), 6th timing (q_48f_t
) and 7th timing (q_48g_t
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
), What specialist 1 observed the patient (q_154b_1
) and What specialist 2 observed the patient (q_154b_2
) q_24
, q_26
, q_28
and q_99.c1
doesn't have defined level Yes
No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) q_16g
and q_30a
doesn't have defined level No
NA
removed in Total Cholesterol lower range (q_56b
) and Triglycerides lower range (q_59b
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
3
added in Father´s birth order (q_108a
) and Number of siblings (q_110a2
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
2011-04-02
replaces value 2011-02-04
in Date of Diagnosis (q_13
) Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
3a Left Upper limb – distal
added in 1st region (q_48a_r
) 3b Left Upper limb – proximal
added in 2nd region (q_48b_r
) 2a Right Upper limb – distal
added in 3rd region (q_48c_r
) 2b Right Upper limb – proximal
added in 4th region (q_48d_r
) 5a Left Lower limb – distal
added in 5th region (q_48e_r
) 4a Right Lower limb – distal
added in 6th region (q_48f_r
) 1 Oro-facial
added in 7th region (q_48g_r
) 2017-12-20
added in ALSFRS(1) Acquisition date (q_51_1.date
) Detectable speech disturbances
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Slight but definite excess of saliva in mouth; may have nightime drooling
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Early eating problems - occasional choking
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Able to grip pen but unable to write
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Needs to be fed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Needs attendant for self-care
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Can initiate, but not turn or adjust sheets alone
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) Nonambulatory functional movement
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Cannot do
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Occurs with >= 1 of the following: eating, bathing, dressing (ADL)
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) Some difficulty sleeping at night due to shortness of breath (does not routinely use more than two pillows)
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) None
to number in ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
Mother
added in Which family member 1 had a history of Alzheimer disease (q_102a_1
) 5
added in Mother´s number of siblings (q_107b
) 6
added in Father´s number of siblings (q_108b
) "marketing"
removed in Main Ocupation (q_139
) "ANTA"
removed in centr_id
ANTA-0019
No
to number in 63 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 31 questions: Mother´s birth order (q_107a
), Number of children (q_110a
), Order of specialist 1 that observed the patient (q_154a_1
), Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 16 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
Yes
to number in 15 questions: q_149g
, q_156h
, q_16a
, q_24c
, q_25a
, q_25b
, q_25c
, ...q_28a
, q_28b
, q_29a
0
added in Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) 2
added in Siblings' birth order (q_110a1
), Number of siblings (q_110a2
), Brain MRI - Normal (q_64_1
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) q_24
, q_26
, q_28
, q_30a
and q_99.c1
doesn't have defined level Yes
After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
), 5th timing (q_48e_t
) and 6th timing (q_48f_t
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
) and Did specialist 1 made diagnosis (q_154d_1
) Neurologist
added in Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
) and What specialist 2 observed the patient (q_154b_2
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
5
added in Mother´s number of siblings (q_107b
) and Father´s number of siblings (q_108b
) "trainer"
removed in Main Ocupation (q_139
) and Second Occupation (q_141
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) General Practitioner
added in First specialist who observed the patient (q_148
) and What specialist 1 observed the patient (q_154b_1
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
2016-08-15
replaces value 2015-08-15
in Date of Invasive ventilation (q_14
) q_16g
doesn't have defined level No
Upper and lower
replaces value Lower limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
5a Left Lower limb – distal
added in 1st region (q_48a_r
) 4a Right Lower limb – distal
added in 2nd region (q_48b_r
) 3a Left Upper limb – distal
added in 3rd region (q_48c_r
) 2a Right Upper limb – distal
added in 4th region (q_48d_r
) 6 Respiratory symptoms
added in 5th region (q_48e_r
) 7 Neck
added in 6th region (q_48f_r
) 2018-02-08
added in ALSFRS(1) Acquisition date (q_51_1.date
) Loss of useful speech
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Marked drooling; requires constant tissue or handkerchief
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) NPO (exclus. parenteral or enteral feeding)
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Able to grip pen but unable to write
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Food must be cut by someone, but can still feed slowly
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Total dependence
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Helpless
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) No purposeful leg movement
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Cannot do
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Significant difficulty, considering using mechanical respiratory support
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) Some difficulty sleeping at night due to shortness of breath (does not routinely use more than two pillows)
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) Invasive mechanical ventilation by intubation or tracheostomy
to number in ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
3
added in Father´s birth order (q_108a
) Yes
removed in q_111
Yes
added in Did specialist 2 made diagnosis (q_154d_2
) "ANTA"
removed in centr_id
ANTA-0020
No
to number in 67 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 29 questions: Father´s birth order (q_108a
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 16 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
Yes
to number in 11 questions: q_152d
, q_152e
, q_152h
, q_156h
, q_16a
, q_24c
, q_25a
, ...q_26b
, q_27a
, q_28b
2
added in Mother´s birth order (q_107a
), Siblings' birth order (q_110a1
), Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Tumor (q_65a_2
), Spinal cord MRI Thoracic - Tumor (q_65b_2
) and Spinal cord MRI Lumbo-sacral - Tumor (q_65c_2
) 0
added in Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) q_24
, q_26
, q_28
, q_30a
and q_99.c1
doesn't have defined level Yes
After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
), 6th timing (q_48f_t
) and 7th timing (q_48g_t
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) Neurologist
added in Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
) and What specialist 2 observed the patient (q_154b_2
) Same time
added in 5th timing (q_48e_t
) and 8th timing (q_48h_t
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
3
added in Mother´s number of siblings (q_107b
) and Number of siblings (q_110a2
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) General Practitioner
added in First specialist who observed the patient (q_148
) and What specialist 1 observed the patient (q_154b_1
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
q_16g
doesn't have defined level No
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
Positive
added in q_43
2a Right Upper limb – distal
added in 1st region (q_48a_r
) 3a Left Upper limb – distal
added in 2nd region (q_48b_r
) 2b Right Upper limb – proximal
added in 3rd region (q_48c_r
) 3b Left Upper limb – proximal
added in 4th region (q_48d_r
) 1 Oro-facial
added in 5th region (q_48e_r
) 5a Left Lower limb – distal
added in 6th region (q_48f_r
) 4a Right Lower limb – distal
added in 7th region (q_48g_r
) 8 Thoracic/abdomen
added in 8th region (q_48h_r
) Lumbo-sacral
replaces value Thoracic
in Region3 (q_50a
) Speech combined with nonvocal communication
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Slight but definite excess of saliva in mouth; may have nightime drooling
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Dietary consistency changes
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Unable to grip pen
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Needs to be fed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Total dependence
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Can turn alone or adjust sheets, but with great difficulty
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) Early ambulation difficulties
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Needs assistance
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
9
added in Father´s number of siblings (q_108b
) Yes
added in q_111
"farmer"
removed in Main Ocupation (q_139
) "ANTA"
removed in centr_id
ANTA-0023
No
to number in 67 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 30 questions: Mother´s birth order (q_107a
), Siblings' birth order (q_110a1
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 16 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
Yes
to number in 11 questions: q_152d
, q_152e
, q_152h
, q_156h
, q_16a
, q_26a
, q_26b
, ...q_28a
, q_28b
, q_29a
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) 2
added in Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Tumor (q_65a_2
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
), What specialist 1 observed the patient (q_154b_1
) and What specialist 2 observed the patient (q_154b_2
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
) and 5th timing (q_48e_t
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) q_26
, q_30a
and q_99.c1
doesn't have defined level Yes
q_16g
and q_24
doesn't have defined level No
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
4
added in Father´s birth order (q_108a
) and Number of siblings (q_110a2
) Rural area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Upper limb
replaces value Upper and lower
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
2 Right Upper limb – distal and proximal
added in 1st region (q_48a_r
) 3 Left Upper limb – distal and proximal
added in 2nd region (q_48b_r
) 4 Right Lower limb – distal and proximal
added in 3rd region (q_48c_r
) 5 Left Lower limb – distal and proximal
added in 4th region (q_48d_r
) 7 Neck
added in 5th region (q_48e_r
) Bulbar
replaces value Thoracic
in Region3 (q_50a
) 2016-09-28
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Able to grip pen but unable to write
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Food must be cut by someone, but can still feed slowly
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Needs attendant for self-care
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Can initiate, but not turn or adjust sheets alone
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) Nonambulatory functional movement
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Cannot do
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Occurs with >= 1 of the following: eating, bathing, dressing (ADL)
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) Some difficulty sleeping at night due to shortness of breath (does not routinely use more than two pillows)
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) None
to number in ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
Yes
replaces value No
in q_89a
"Lithium"
added in Drug(s) used in psychiatric medication (q_89b
) 2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) "Homozygous D90A"
replaces value "Homozigot D90A"
in SOD1 mutation type (q_97b
) 6
added in Mother´s number of siblings (q_107b
) 5
added in Father´s number of siblings (q_108b
) 3
added in Number of children (q_110a
) Yes
added in q_111
"housewife"
removed in Main Ocupation (q_139
) "ANTA"
removed in centr_id
ANTA-0025
No
to number in 62 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 33 questions: How many family members 1 had a history of Alzheimer disease (q_102a_2
), Father´s birth order (q_108a
), Father´s number of siblings (q_108b
), Siblings' birth order (q_110a1
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), ...Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
), Mean number of packs/day (q_88e
) Yes
to number in 16 questions: q_149d
, q_149e
, q_149f
, q_149g
, q_149h
, q_156h
, q_16a
, ...q_28a
, q_28b
, q_28c
No
removed in 13 questions: q_123
, q_125
, q_126
, q_127
, q_129
, q_130
, q_131
, ...q_135
, q_136
, q_137
q_124
, q_128
, q_138
, q_24
, q_26
, q_28
, q_30a
and q_99.c1
doesn't have defined level Yes
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
) and ALS depression inventory lower range (q_47c
) 2
added in Number of children (q_110a
), Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Tumor (q_65a_2
), Spinal cord MRI Thoracic - Tumor (q_65b_2
) and Spinal cord MRI Lumbo-sacral - Tumor (q_65c_2
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
), 5th timing (q_48e_t
) and 6th timing (q_48f_t
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
), What specialist 1 observed the patient (q_154b_1
) and What specialist 2 observed the patient (q_154b_2
) 3
added in Mother´s birth order (q_107a
) and Number of siblings (q_110a2
) No
added in Head/Neck trauma in the last 5 years (q_115
) and Did specialist 1 made diagnosis (q_154d_1
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
2016-09-21
replaces value 2016-09-10
in Date of Invasive ventilation (q_14
) q_16g
doesn't have defined level No
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
3a Left Upper limb – distal
added in 1st region (q_48a_r
) 5a Left Lower limb – distal
added in 2nd region (q_48b_r
) 2a Right Upper limb – distal
added in 3rd region (q_48c_r
) 4a Right Lower limb – distal
added in 4th region (q_48d_r
) 1 Oro-facial
added in 5th region (q_48e_r
) 6 Respiratory symptoms
added in 6th region (q_48f_r
) 2016-09-20
added in ALSFRS(1) Acquisition date (q_51_1.date
) Intelligible with repeating
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Marked excess of saliva with some drooling
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Dietary consistency changes
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Unable to grip pen
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Needs to be fed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Total dependence
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Helpless
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) No purposeful leg movement
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Cannot do
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Significant difficulty, considering using mechanical respiratory support
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) Some difficulty sleeping at night due to shortness of breath (does not routinely use more than two pillows)
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) Invasive mechanical ventilation by intubation or tracheostomy
to number in ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) NA
replaces value 8
in ALSFRS-R total (q_51_1.score
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
1985
replaces value NA
in Year of initiation of smoking (q_88b
) 2010
replaces value NA
in Year of interruption of smoking (q_88d
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
Mother
added in Which family member 1 had a history of Alzheimer disease (q_102a_1
) 4
added in Mother´s number of siblings (q_107b
) Head
added in Head/Neck trauma > 5 years (q_116
) "Driver"
removed in Main Ocupation (q_139
) "EMG"
removed in Investigation requested by the 1st specialist (q_149
) Yes
added in Did specialist 2 made diagnosis (q_154d_2
) "ANTA"
removed in centr_id
ANTA-0026
No
to number in 71 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 30 questions: Father´s birth order (q_108a
), Siblings' birth order (q_110a1
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Tumor (q_64_2
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 17 questions: q_111
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_136
, q_137
, q_138
Yes
to number in q_149b
, q_149e
, q_152h
, q_156h
, q_16a
, q_26a
and q_28a
0
added in Age of family member 1 at the moment of death (q_106_1d
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
), 5th timing (q_48e_t
) and 6th timing (q_48f_t
) 2
added in Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Normal (q_64_1
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
), ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
), ALSFRS(1) 8. Walking (q_51_1.8
) and ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) q_16g
, q_24
and q_30a
doesn't have defined level No
q_26
, q_28
and q_99.c1
doesn't have defined level Yes
No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
) and Did specialist 1 made diagnosis (q_154d_1
) Neurologist
added in Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
) and What specialist 2 observed the patient (q_154b_2
) None
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) General Practitioner
added in First specialist who observed the patient (q_148
) and What specialist 1 observed the patient (q_154b_1
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Upper and lower
replaces value Lower limb
in Limb onset (q_18a
) Distal and proximal
replaces value Proximal
in Predominant impairment (q_18c
) 3b Left Upper limb – proximal
added in 1st region (q_48a_r
) 5b Left Lower limb – proximal
added in 2nd region (q_48b_r
) 3a Left Upper limb – distal
added in 3rd region (q_48c_r
) 5a Left Lower limb – distal
added in 4th region (q_48d_r
) 2a Right Upper limb – distal
added in 5th region (q_48e_r
) 2b Right Upper limb – proximal
added in 6th region (q_48f_r
) Cervical
replaces value Lumbo-sacral
in Region1 (q_49a
) Lumbo-sacral
replaces value Cervical
in Region2 (q_49b
) 2016-03-04
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Slow or sloppy; all words are legible
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Somewhat slow and clumsy, but no help needed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Independent and complete self-care with effort of decreased efficiency
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Occurs with >= 1 of the following: eating, bathing, dressing (ADL)
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
2018-02-20
added in Date of initiation of Riluzole (q_91b
) Mutation found
removed in q_97a
"SNP"
removed in SOD1 mutation type (q_97b
) Son
added in Which family member 1 had died (q_106_1a
) Other violent death
added in What cause of death of family member 1 (q_106_1b
) 6
added in Mother´s birth order (q_107a
) 7
added in Mother´s number of siblings (q_107b
) 4
added in Father´s number of siblings (q_108b
) 3
added in Number of siblings (q_110a2
) "housewife"
removed in Main Ocupation (q_139
) Yes
added in Did specialist 2 made diagnosis (q_154d_2
) "ANTA"
removed in centr_id
ANTA-0054
No
to number in 61 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 29 questions: Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Tumor (q_64_2
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), Brain MRI - NA (q_64_7
), ...Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
), Mean number of packs/day (q_88e
) Yes
to number in 17 questions: q_119c
, q_152d
, q_156h
, q_16a
, q_24b
, q_24c
, q_25a
, ...q_29a
, q_29b
, q_29c
No
removed in 16 questions: q_110d
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_135
, q_136
, q_138
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
) and ALS depression inventory lower range (q_47c
) 2
added in Siblings' birth order (q_110a1
), Number of siblings (q_110a2
), Brain MRI - Normal (q_64_1
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) q_16g
, q_24
, q_26
and q_30a
doesn't have defined level No
"Cleaner"
removed in Main Ocupation (q_139
), Main Ocupation (q_140
), Second Occupation (q_141
) and Second Occupation (q_142
) q_137
, q_28
and q_99.c1
doesn't have defined level Yes
4
added in Mother´s birth order (q_107a
) and Mother´s number of siblings (q_107b
) 3
added in Father´s birth order (q_108a
) and Father´s number of siblings (q_108b
) No
added in Head/Neck trauma in the last 5 years (q_115
) and Head/Neck trauma > 5 years (q_116
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Orthopaedist
added in First specialist who observed the patient (q_148
) and What specialist 1 observed the patient (q_154b_1
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Upper and lower
replaces value Lower limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
No
replaces value Yes
in q_37
Lumbo-sacral
removed in Region1 (q_49a
) Cervical
removed in Region2 (q_49b
) Bulbar
removed in Region3 (q_50a
) 2017-06-24
added in ALSFRS(1) Acquisition date (q_51_1.date
) Intelligible with repeating
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Slight but definite excess of saliva in mouth; may have nightime drooling
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Early eating problems - occasional choking
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Slow or sloppy; all words are legible
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Can cut most foods, although clumsy and slow; some help needed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Intermittent assistance or substitute methods
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Normal
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) Early ambulation difficulties
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Slow
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Occurs when walking
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) Unable to sleep
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) Invasive mechanical ventilation by intubation or tracheostomy
to number in ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) 28
removed in ALSFRS-R total (q_51_1.score
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) q_88b
) doesn't allow for tagged NA 2
Wt/wt (normal)
removed in q_97a
Father
added in Which family member 1 had died (q_106_1a
) other
added in What cause of death of family member 1 (q_106_1b
) "unknown"
added in What other cause of death of family member 1 (q_106_1c
) 84
added in Age of family member 1 at the moment of death (q_106_1d
) Neurosurgeon
added in Second specialist who observed the patient (q_150
) Neurologist
added in Specialist who made the diagnosis (q_153
) Yes
added in Did specialist 1 made diagnosis (q_154d_1
) "ANTA"
removed in centr_id
29
replaces value 54
in x
ANTA-0055
No
to number in 65 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 30 questions: Father´s birth order (q_108a
), Father´s number of siblings (q_108b
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 16 questions: q_110d
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_135
, q_136
, q_137
Yes
to number in 13 questions: q_152g
, q_156h
, q_16b
, q_24b
, q_24c
, q_25a
, q_26a
, ...q_28b
, q_28c
, q_29a
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) q_138
, q_24
, q_26
and q_99.c1
doesn't have defined level Yes
2
added in Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) "Housewife"
removed in Main Ocupation (q_139
), Main Ocupation (q_140
), Second Occupation (q_141
) and Second Occupation (q_142
) q_16g
, q_28
and q_30a
doesn't have defined level No
None
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
4
added in Mother´s birth order (q_107a
) and Mother´s number of siblings (q_107b
) No
added in Head/Neck trauma in the last 5 years (q_115
) and Head/Neck trauma > 5 years (q_116
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Pneumologist
added in First specialist who observed the patient (q_148
) and What specialist 1 observed the patient (q_154b_1
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
2017-07-26
removed in Date of Death (q_15
) Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
Bulbar
removed in Region1 (q_49a
) Cervical
removed in Region2 (q_49b
) q_50a
) doesn't have defined level Cervical
2017-06-24
added in ALSFRS(1) Acquisition date (q_51_1.date
) Speech combined with nonvocal communication
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Moderately excessive saliva; may have minimal drooling
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Dietary consistency changes
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Not all words are legible
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Food must be cut by someone, but can still feed slowly
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Needs attendant for self-care
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Can initiate, but not turn or adjust sheets alone
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) Nonambulatory functional movement
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Mild unsteadiness or fatigue
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Occurs at rest Shortness of breath at rest, difficulty breathing when either sitting or lying
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) Yes
replaces value No
in q_63
Wt/wt (normal)
removed in q_97a
Father
added in Which family member 1 had died (q_106_1a
) other
added in What cause of death of family member 1 (q_106_1b
) "UNKNOWN"
added in What other cause of death of family member 1 (q_106_1c
) 50
added in Age of family member 1 at the moment of death (q_106_1d
) 13
added in Number of children (q_110a
) 3
added in Siblings' birth order (q_110a1
) 8
added in Number of siblings (q_110a2
) Other
added in Second specialist who observed the patient (q_150
) Neurologist
added in Specialist who made the diagnosis (q_153
) Yes
added in Did specialist 1 made diagnosis (q_154d_1
) "ANTA"
removed in centr_id
30
replaces value 55
in x
ANTA-0007
No
to number in 67 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 29 questions: Mother´s birth order (q_107a
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 19 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_145
, q_146
, q_147
Yes
to number in 11 questions: q_149d
, q_149e
, q_149f
, q_149g
, q_152h
, q_156h
, q_16a
, ...q_27a
, q_27b
, q_28a
0
added in Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) 2
added in Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Tumor (q_65a_2
), Spinal cord MRI Thoracic - Tumor (q_65b_2
) and Spinal cord MRI Lumbo-sacral - Tumor (q_65c_2
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
), What specialist 1 observed the patient (q_154b_1
) and What specialist 2 observed the patient (q_154b_2
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
) and 5th timing (q_48e_t
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) q_16g
, q_24
and q_30a
doesn't have defined level No
q_26
, q_28
and q_99.c1
doesn't have defined level Yes
Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
), ALSFRS(1) 8. Walking (q_51_1.8
) and ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
3
added in Mother´s number of siblings (q_107b
) and Father´s birth order (q_108a
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
2014-05-04
replaces value 2014-05-02
in Date of Diagnosis (q_13
) Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
2a Right Upper limb – distal
added in 1st region (q_48a_r
) 3a Left Upper limb – distal
added in 2nd region (q_48b_r
) 2b Right Upper limb – proximal
added in 3rd region (q_48c_r
) 3b Left Upper limb – proximal
added in 4th region (q_48d_r
) 4a Right Lower limb – distal
added in 5th region (q_48e_r
) 2017-11-30
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Unable to grip pen
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Food must be cut by someone, but can still feed slowly
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Intermittent assistance or substitute methods
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Somewhat slow and clumsy, but no help needed
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
Yes
replaces value No
in q_91a
2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
7
added in Father´s number of siblings (q_108b
) 4
added in Siblings' birth order (q_110a1
) 9
added in Number of siblings (q_110a2
) "warden"
removed in Main Ocupation (q_139
) "ANTA"
removed in centr_id
ANTA-0009
No
to number in 65 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 29 questions: Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), Brain MRI - NA (q_64_7
), ...Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
), Mean number of packs/day (q_88e
) No
removed in 16 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
Yes
to number in 13 questions: q_149d
, q_149e
, q_149g
, q_156h
, q_16a
, q_24c
, q_26a
, ...q_28a
, q_28b
, q_29b
q_24
, q_26
, q_28
, q_30a
and q_99.c1
doesn't have defined level Yes
0
added in Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
) and ALS depression inventory lower range (q_47c
) 2
added in Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Tumor (q_65a_2
), Spinal cord MRI Thoracic - Tumor (q_65b_2
) and Spinal cord MRI Lumbo-sacral - Tumor (q_65c_2
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
) and What specialist 2 observed the patient (q_154b_2
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
) and 4th timing (q_48d_t
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
), ALSFRS(1) 8. Walking (q_51_1.8
) and ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) 4
added in Father´s birth order (q_108a
), Father´s number of siblings (q_108b
) and Siblings' birth order (q_110a1
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
) and Did specialist 1 made diagnosis (q_154d_1
) Somewhat slow and clumsy, but no help needed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) and ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
Rural area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
q_16g
doesn't have defined level No
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
2b Right Upper limb – proximal
added in 1st region (q_48a_r
) 2a Right Upper limb – distal
added in 2nd region (q_48b_r
) 3b Left Upper limb – proximal
added in 3rd region (q_48c_r
) 3a Left Upper limb – distal
added in 4th region (q_48d_r
) Bulbar
removed in Region2 (q_49b
) 2017-12-04
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Slow or sloppy; all words are legible
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Independent and complete self-care with effort of decreased efficiency
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
3
added in Mother´s birth order (q_107a
) 5
added in Mother´s number of siblings (q_107b
) 6
added in Number of siblings (q_110a2
) "driver"
removed in Main Ocupation (q_139
) "farmer"
removed in Second Occupation (q_141
) Cardiologist
added in What specialist 1 observed the patient (q_154b_1
) Yes
added in Did specialist 2 made diagnosis (q_154d_2
) "ANTA"
removed in centr_id
ANTA-0010
No
to number in 69 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 30 questions: Mother´s birth order (q_107a
), Father´s birth order (q_108a
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 16 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
Yes
to number in q_156h
, q_16a
, q_26a
, q_26b
, q_26c
, q_27a
, q_27b
, q_28a
and q_28b
0
added in Cognition - ECAS lower range (q_45b
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
), 4th timing (q_48d_t
), 5th timing (q_48e_t
) and 6th timing (q_48f_t
) 2
added in Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Tumor (q_65b_2
) and Spinal cord MRI Lumbo-sacral - Tumor (q_65c_2
) q_26
, q_28
, q_30a
and q_99.c1
doesn't have defined level Yes
Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
), ALSFRS(1) 4. Handwriting (q_51_1.4
), ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) and ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
), What specialist 1 observed the patient (q_154b_1
) and What specialist 2 observed the patient (q_154b_2
) None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) q_16g
and q_24
doesn't have defined level No
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
3
added in Mother´s number of siblings (q_107b
) and Number of children (q_110a
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Upper and lower
added in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
0
replaces value 136
in Cognition - ECAS upper range (q_45c
) 5a Left Lower limb – distal
added in 1st region (q_48a_r
) 4a Right Lower limb – distal
added in 2nd region (q_48b_r
) 5b Left Lower limb – proximal
added in 3rd region (q_48c_r
) 4b Right Lower limb – proximal
added in 4th region (q_48d_r
) 3b Left Upper limb – proximal
added in 5th region (q_48e_r
) 2b Right Upper limb – proximal
added in 6th region (q_48f_r
) Thoracic
removed in Region3 (q_50a
) 2017-12-04
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Normal function
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Early ambulation difficulties
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Needs assistance
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
5
added in Father´s number of siblings (q_108b
) 6
added in Siblings' birth order (q_110a1
) 7
added in Number of siblings (q_110a2
) "repairman"
removed in Main Ocupation (q_139
) "ANTA"
removed in centr_id
ANTA-0013
No
to number in 66 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 29 questions: Siblings' birth order (q_110a1
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 18 questions: q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, q_130
, ...q_145
, q_146
, q_147
Yes
to number in 12 questions: q_149d
, q_149e
, q_149f
, q_152h
, q_156h
, q_16a
, q_26b
, ...q_27c
, q_28a
, q_28b
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) 2
added in Mother´s birth order (q_107a
), Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Tumor (q_65a_2
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
), ALSFRS(1) 4. Handwriting (q_51_1.4
), ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
), ALSFRS(1) 8. Walking (q_51_1.8
) and ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
), What specialist 1 observed the patient (q_154b_1
) and What specialist 2 observed the patient (q_154b_2
) q_123
, q_26
, q_28
and q_99.c1
doesn't have defined level Yes
No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) q_16g
, q_24
and q_30a
doesn't have defined level No
None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) Distal and proximal
replaces value Proximal
in Predominant impairment (q_18c
) 2b Right Upper limb – proximal
added in 1st region (q_48a_r
) 3b Left Upper limb – proximal
added in 2nd region (q_48b_r
) After
added in 2nd timing (q_48b_t
) 2017-12-20
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Somewhat slow and clumsy, but no help needed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Independent and complete self-care with effort of decreased efficiency
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
Yes
replaces value No
in q_91a
2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
6
added in Mother´s number of siblings (q_107b
) 3
added in Father´s birth order (q_108a
) 4
added in Father´s number of siblings (q_108b
) 7
added in Number of siblings (q_110a2
) "farmer"
removed in Main Ocupation (q_139
) "ANTA"
removed in centr_id
ANTA-0021
No
to number in 70 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 32 questions: Mother´s birth order (q_107a
), Father´s birth order (q_108a
), Father´s number of siblings (q_108b
), Siblings' birth order (q_110a1
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 16 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
Yes
to number in q_149d
, q_149h
, q_152h
, q_156h
, q_16a
, q_24c
, q_26a
and q_28a
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) 2
added in Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Tumor (q_65a_2
), Spinal cord MRI Thoracic - Tumor (q_65b_2
) and Spinal cord MRI Lumbo-sacral - Tumor (q_65c_2
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
), What specialist 1 observed the patient (q_154b_1
) and What specialist 2 observed the patient (q_154b_2
) q_24
, q_26
, q_28
and q_99.c1
doesn't have defined level Yes
Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
), ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
), ALSFRS(1) 8. Walking (q_51_1.8
) and ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
) and 4th timing (q_48d_t
) None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) No
added in Head/Neck trauma in the last 5 years (q_115
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) q_16g
and q_30a
doesn't have defined level No
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) "ANTC0008"
added in Control subject code (q_3b
) q_7
) doesn't have defined level Caucassian
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
1 Oro-facial
added in 1st region (q_48a_r
) 2b Right Upper limb – proximal
added in 2nd region (q_48b_r
) 2a Right Upper limb – distal
added in 3rd region (q_48c_r
) 3b Left Upper limb – proximal
added in 4th region (q_48d_r
) Lumbo-sacral
removed in Region3 (q_50a
) 2016-03-01
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Slow or sloppy; all words are legible
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Somewhat slow and clumsy, but no help needed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Independent and complete self-care with effort of decreased efficiency
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
"Lithium"
replaces value "Litium"
in Drug(s) used in psychiatric medication (q_89b
) 2014-01-01
replaces value 1905-07-06
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
10
added in Mother´s number of siblings (q_107b
) 4
added in Number of siblings (q_110a2
) Head
added in Head/Neck trauma > 5 years (q_116
) "Teacher"
removed in Main Ocupation (q_139
) "ANTA"
removed in centr_id
ANTA-0024
No
to number in 74 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 29 questions: Siblings' birth order (q_110a1
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 16 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) 2
added in Order of specialist 2 that observed the patient (q_154a_2
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - Myelitis (q_65a_4
), Spinal cord MRI Thoracic - Tumor (q_65b_2
) and Spinal cord MRI Lumbo-sacral - Tumor (q_65c_2
) q_24
, q_26
, q_28
and q_99.c1
doesn't have defined level Yes
Yes
to number in q_156h
, q_25b
, q_26b
and q_28b
Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
), ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
), ALSFRS(1) 8. Walking (q_51_1.8
) and ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) 3
added in Father´s birth order (q_108a
), Number of siblings (q_110a2
), How long moderate sport activity 1 (q_112a_1c
) and How long moderate sport activity 2 (q_112a_2c
) No
added in Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), Did specialist 1 made diagnosis (q_154d_1
) and Did specialist 2 made diagnosis (q_154d_2
) After
added in 2nd timing (q_48b_t
), 3rd timing (q_48c_t
) and 4th timing (q_48d_t
) None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) Neurologist
added in Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
) and What specialist 2 observed the patient (q_154b_2
) q_16g
and q_30a
doesn't have defined level No
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
4
added in Mother´s birth order (q_107a
) and Mother´s number of siblings (q_107b
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Internal Medicine
added in First specialist who observed the patient (q_148
) and What specialist 1 observed the patient (q_154b_1
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
2a Right Upper limb – distal
added in 1st region (q_48a_r
) 2b Right Upper limb – proximal
added in 2nd region (q_48b_r
) 1 Oro-facial
added in 3rd region (q_48c_r
) 3b Left Upper limb – proximal
added in 4th region (q_48d_r
) 2016-08-11
added in ALSFRS(1) Acquisition date (q_51_1.date
) Detectable speech disturbances
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Slow or sloppy; all words are legible
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Normal function
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Somewhat slow and clumsy, but no help needed
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) No
replaces value Yes
in q_63
Yes
replaces value No
in q_89a
"Lithium"
added in Drug(s) used in psychiatric medication (q_89b
) 2016-01-01
replaces value 1905-07-08
in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
5
added in Father´s number of siblings (q_108b
) Basketball
added in Type of moderate sport activity 1 (q_112a_1a
) Fast walking
added in Type of moderate sport activity 2 (q_112a_2a
) "teacher"
removed in Main Ocupation (q_139
) "ANTA"
removed in centr_id
ANTA-0052
No
to number in 64 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 27 questions: Brain MRI - Tumor (q_64_2
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), Brain MRI - NA (q_64_7
), Spinal cord MRI Cervical - Tumor (q_65a_2
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 17 questions: q_110d
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_136
, q_137
, q_138
Yes
to number in 14 questions: q_149d
, q_152d
, q_152h
, q_156h
, q_16b
, q_24c
, q_25b
, ...q_28a
, q_28b
, q_28c
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) 2
added in Mother´s birth order (q_107a
), Number of children (q_110a
), Brain MRI - Normal (q_64_1
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) Normal
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
), ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
), ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
), ALSFRS(1) 8. Walking (q_51_1.8
) and ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) q_16g
, q_24
, q_26
and q_30a
doesn't have defined level No
"Housewife"
removed in Main Ocupation (q_139
), Main Ocupation (q_140
), Second Occupation (q_141
) and Second Occupation (q_142
) None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) q_28
and q_99.c1
doesn't have defined level Yes
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
7
added in Mother´s number of siblings (q_107b
) and Siblings' birth order (q_110a1
) No
added in Head/Neck trauma in the last 5 years (q_115
) and Head/Neck trauma > 5 years (q_116
) Rural area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) 1975-06-20
replaces value 1962-06-20
in Date of birth (q_5
) q_7
) doesn't have defined level Caucassian
Upper and lower
replaces value Lower limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
No
replaces value Yes
in q_37
Bulbar
removed in Region1 (q_49a
) Lumbo-sacral
removed in Region2 (q_49b
) q_50a
) doesn't have defined level Cervical
2017-06-23
added in ALSFRS(1) Acquisition date (q_51_1.date
) Speech combined with nonvocal communication
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Slight but definite excess of saliva in mouth; may have nightime drooling
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Early eating problems - occasional choking
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Normal function
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
Father
added in Which family member 1 had died (q_106_1a
) Myocardial infarction
added in What cause of death of family member 1 (q_106_1b
) 65
added in Age of family member 1 at the moment of death (q_106_1d
) 3
added in Father´s birth order (q_108a
) 5
added in Father´s number of siblings (q_108b
) 8
added in Number of siblings (q_110a2
) NA
removed in Time gap between first-second specialist (q_151
) "ANTA"
removed in centr_id
27
replaces value 52
in x
ANTA-0053
No
to number in 71 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 29 questions: Siblings' birth order (q_110a1
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Tumor (q_64_2
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 20 questions: q_110d
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_145
, q_146
, q_147
Yes
to number in q_149h
, q_156h
, q_27a
, q_27c
, q_29a
, q_29b
and q_29c
2
added in Mother´s birth order (q_107a
), Number of siblings (q_110a2
), Brain MRI - Normal (q_64_1
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) 0
added in Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) q_16g
, q_24
, q_26
and q_30a
doesn't have defined level No
Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
), ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) and ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) Neurologist
added in First specialist who observed the patient (q_148
), Specialist who made the diagnosis (q_153
) and What specialist 1 observed the patient (q_154b_1
) q_28
and q_99.c1
doesn't have defined level Yes
3
added in Mother´s number of siblings (q_107b
) and Father´s birth order (q_108a
) No
added in Head/Neck trauma in the last 5 years (q_115
) and Head/Neck trauma > 5 years (q_116
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Upper and lower
replaces value Lower limb
in Limb onset (q_18a
) Distal and proximal
replaces value Proximal
in Predominant impairment (q_18c
) Lumbo-sacral
removed in Region1 (q_49a
) Cervical
removed in Region2 (q_49b
) 2017-06-23
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Slow or sloppy; all words are legible
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Independent and complete self-care with effort of decreased efficiency
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Walks with assistance
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Needs assistance
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) q_88d
) doesn't allow for tagged NA 2
"Fluoxetine"
replaces value "FLUOXETİNE"
in Drug(s) used in psychiatric medication (q_89b
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
Father
added in Which family member 1 had a history of other severe disease (q_105_1a
) Cancer lung
added in What severe disease family member 1 had (q_105_1b
) Mother
added in Which family member 2 had a history of other severe disease (q_105_2a
) other
added in What severe disease family member 2 had (q_105_2b
) "stroke"
added in What other severe disease family member 2 had (q_105_2c
) 4
added in Father´s number of siblings (q_108b
) "GRAFİC DESİGNER"
removed in Main Ocupation (q_139
) Large town– > 100 000
removed in Place of living (q_144
) NA
removed in Time gap between first-second specialist (q_151
) Yes
added in Did specialist 1 made diagnosis (q_154d_1
) "ANTA"
removed in centr_id
28
replaces value 53
in x
ANTA-0056
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) No
to number in 57 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
1
added in 28 questions: Siblings' birth order (q_110a1
), Brain MRI - Tumor (q_64_2
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), Brain MRI - NA (q_64_7
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) Yes
to number in 21 questions: q_149d
, q_149e
, q_149f
, q_149g
, q_149h
, q_152d
, q_152e
, ...q_29a
, q_29b
, q_29c
No
removed in 17 questions: q_110d
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_136
, q_137
, q_138
2
added in Mother´s birth order (q_107a
), Father´s birth order (q_108a
), Number of children (q_110a
), Brain MRI - Normal (q_64_1
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) 0
added in Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) q_16g
, q_24
, q_28
and q_30a
doesn't have defined level No
"farmer"
removed in Main Ocupation (q_139
), Main Ocupation (q_140
), Second Occupation (q_141
) and Second Occupation (q_142
) q_26
and q_99.c1
doesn't have defined level Yes
None
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
3
added in Father´s number of siblings (q_108b
) and Number of siblings (q_110a2
) No
added in Head/Neck trauma in the last 5 years (q_115
) and Head/Neck trauma > 5 years (q_116
) Rural area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Neurologist
added in First specialist who observed the patient (q_148
) and Second specialist who observed the patient (q_150
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
Cervical
removed in Region1 (q_49a
) Lumbo-sacral
removed in Region2 (q_49b
) Thoracic
removed in Region3 (q_50a
) 2017-06-24
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Able to grip pen but unable to write
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Can cut most foods, although clumsy and slow; some help needed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Total dependence
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Can initiate, but not turn or adjust sheets alone
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) Early ambulation difficulties
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Needs assistance
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Occurs at rest Shortness of breath at rest, difficulty breathing when either sitting or lying
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
8
added in Mother´s number of siblings (q_107b
) No
replaces value Yes
in q_145
"ANTA"
removed in centr_id
31
replaces value 56
in x
ANTA-0057
No
to number in 62 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 31 questions: Mother´s birth order (q_107a
), Father´s birth order (q_108a
), Siblings' birth order (q_110a1
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Tumor (q_64_2
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) Yes
to number in 16 questions: q_149f
, q_149g
, q_152d
, q_152e
, q_152f
, q_152g
, q_152h
, ...q_28b
, q_29a
, q_29b
No
removed in 15 questions: q_110d
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_135
, q_136
, q_138
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) q_134
, q_137
, q_28
, q_30a
and q_99.c1
doesn't have defined level Yes
2
added in Number of siblings (q_110a2
), Brain MRI - Normal (q_64_1
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) "mechanical enjineer"
removed in Main Ocupation (q_139
), Main Ocupation (q_140
), Second Occupation (q_141
) and Second Occupation (q_142
) q_16g
, q_24
and q_26
doesn't have defined level No
None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
) and What specialist 1 observed the patient (q_154b_1
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) and ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
No
added in Head/Neck trauma in the last 5 years (q_115
) and Head/Neck trauma > 5 years (q_116
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) 1026-09-23
replaces value 2016-09-23
in Date of consultation (q_4
) q_7
) doesn't have defined level Caucassian
Upper and lower
replaces value Lower limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
Lumbo-sacral
removed in Region1 (q_49a
) Cervical
removed in Region2 (q_49b
) 2017-06-24
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Slow or sloppy; all words are legible
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Independent and complete self-care with effort of decreased efficiency
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Somewhat slow and clumsy, but no help needed
to number in ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) Walks with assistance
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Mild unsteadiness or fatigue
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) Wt/wt (normal)
removed in q_97a
Father
added in Which family member 1 had died (q_106_1a
) other
added in What cause of death of family member 1 (q_106_1b
) "UNKNOWN"
added in What other cause of death of family member 1 (q_106_1c
) 67
added in Age of family member 1 at the moment of death (q_106_1d
) 4
added in Mother´s number of siblings (q_107b
) 3
added in Father´s number of siblings (q_108b
) Yes
added in Did specialist 1 made diagnosis (q_154d_1
) "ANTA"
removed in centr_id
32
replaces value 57
in x
ANTA-0058
No
to number in 77 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 29 questions: Lives in Rural Area/Urban (q_143a
), Lives in Rural Area/Urban (q_144a
), Brain MRI - Tumor (q_64_2
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 20 questions: q_110d
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_145
, q_146
, q_147
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) 2
added in Number of children (q_110a
), Siblings' birth order (q_110a1
), Brain MRI - Normal (q_64_1
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
), ALSFRS(1) 4. Handwriting (q_51_1.4
), ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
), ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) and ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) q_16g
, q_24
, q_26
and q_30a
doesn't have defined level No
None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
) and Specialist who made the diagnosis (q_153
) q_28
and q_99.c1
doesn't have defined level Yes
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
3
added in Mother´s birth order (q_107a
) and Father´s birth order (q_108a
) No
added in Head/Neck trauma in the last 5 years (q_115
) and Head/Neck trauma > 5 years (q_116
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Yes
to number in q_16a
Upper and lower
replaces value Lower limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
Cervical
removed in Region1 (q_49a
) Lumbo-sacral
removed in Region2 (q_49b
) 2017-06-24
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Normal function
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Early ambulation difficulties
to number in ALSFRS(1) 8. Walking (q_51_1.8
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
8
added in Mother´s number of siblings (q_107b
) 11
added in Father´s number of siblings (q_108b
) 7
added in Number of siblings (q_110a2
) "ANTA"
removed in centr_id
33
replaces value 58
in x
ANTA-0060
No
to number in 69 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 27 questions: Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), Brain MRI - NA (q_64_7
), Spinal cord MRI Cervical - Normal (q_65a_1
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 20 questions: q_110d
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_145
, q_146
, q_147
Yes
to number in q_149a
, q_149h
, q_152h
, q_156h
, q_16a
, q_24c
, q_26a
, q_26b
and q_26c
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
), ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
), ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
), ALSFRS(1) 8. Walking (q_51_1.8
) and ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) 2
added in Number of children (q_110a
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - NA (q_65a_8
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) q_16g
, q_24
, q_28
and q_30a
doesn't have defined level No
None
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
), ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) 3
added in Mother´s birth order (q_107a
), Father´s birth order (q_108a
) and Siblings' birth order (q_110a1
) 6
added in Mother´s number of siblings (q_107b
), Father´s number of siblings (q_108b
) and Number of siblings (q_110a2
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
) and Specialist who made the diagnosis (q_153
) q_26
and q_99.c1
doesn't have defined level Yes
Stroke - type unknown
added in What severe disease family member 1 had (q_105_1b
) and What cause of death of family member 1 (q_106_1b
) No
added in Head/Neck trauma in the last 5 years (q_115
) and Head/Neck trauma > 5 years (q_116
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
Cervical
removed in Region1 (q_49a
) Lumbo-sacral
removed in Region2 (q_49b
) Thoracic
removed in Region3 (q_50a
) 2017-06-25
added in ALSFRS(1) Acquisition date (q_51_1.date
) Intelligible with repeating
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Slow or sloppy; all words are legible
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Normal function
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) 2016
replaces value NA
in Year of interruption of smoking (q_88d
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) Wt/wt (normal)
removed in q_97a
Mother
added in Which family member 1 had a history of other severe disease (q_105_1a
) Father
added in Which family member 1 had died (q_106_1a
) 53
added in Age of family member 1 at the moment of death (q_106_1d
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) Rural area
to number in Lives in Rural Area/Urban (q_144a
) "ANTA"
removed in centr_id
35
replaces value 60
in x
ANTA-0061
No
to number in 66 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 59 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 30 questions: Mother´s birth order (q_107a
), Mother´s number of siblings (q_107b
), Order of specialist 1 that observed the patient (q_154a_1
), Brain MRI - Normal (q_64_1
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 17 questions: q_110d
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_136
, q_137
, q_138
Yes
to number in 12 questions: q_149d
, q_149e
, q_152h
, q_156h
, q_16a
, q_26a
, q_26b
, ...q_27b
, q_28a
, q_28c
0
added in Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) 2
added in Number of children (q_110a
), Brain MRI - Tumor (q_64_2
), Spinal cord MRI Cervical - NA (q_65a_8
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) q_16g
, q_24
, q_28
and q_30a
doesn't have defined level No
"Housewife"
removed in Main Ocupation (q_139
), Main Ocupation (q_140
), Second Occupation (q_141
) and Second Occupation (q_142
) Neurologist
added in First specialist who observed the patient (q_148
), Second specialist who observed the patient (q_150
), Specialist who made the diagnosis (q_153
) and What specialist 1 observed the patient (q_154b_1
) q_26
and q_99.c1
doesn't have defined level Yes
Normal
to number in ALSFRS(1) 2. Salivation (q_51_1.2
) and ALSFRS(1) 7. Turning in Bed and Adjusting Bed Clothes (q_51_1.7
) None
to number in ALSFRS(1) 11. Orthopnea (q_51_1.11
) and ALSFRS(1) 12. Respiratory insufficiency (q_51_1.12
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
4
added in Father´s birth order (q_108a
) and Number of siblings (q_110a2
) No
added in Head/Neck trauma in the last 5 years (q_115
) and Head/Neck trauma > 5 years (q_116
) Rural area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
Cervical
removed in Region1 (q_49a
) Lumbo-sacral
removed in Region2 (q_49b
) Thoracic
removed in Region3 (q_50a
) 2017-06-25
added in ALSFRS(1) Acquisition date (q_51_1.date
) Normal speech processes
to number in ALSFRS(1) 1. Speech (q_51_1.1
) Normal eating habits
to number in ALSFRS(1) 3. Swallowing (q_51_1.3
) Slow or sloppy; all words are legible
to number in ALSFRS(1) 4. Handwriting (q_51_1.4
) Can cut most foods, although clumsy and slow; some help needed
to number in ALSFRS(1) 5. Cutting Food and Handling Utensils (q_51_1.5
) Independent and complete self-care with effort of decreased efficiency
to number in ALSFRS(1) 6. Dressing and Hygiene (q_51_1.6
) Early ambulation difficulties
to number in ALSFRS(1) 8. Walking (q_51_1.8
) Mild unsteadiness or fatigue
to number in ALSFRS(1) 9. Climbing Stairs (q_51_1.9
) Occurs when walking
to number in ALSFRS(1) 10. Dyspnea (q_51_1.10
) 40
removed in ALSFRS-R total (q_51_1.score
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) 5
added in Father´s number of siblings (q_108b
) 3
added in Siblings' birth order (q_110a1
) Yes
added in Did specialist 1 made diagnosis (q_154d_1
) "ANTA"
removed in centr_id
36
replaces value 61
in x
ANTA-0059
No
to number in 78 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_38.1b
, q_38.2a
, q_38.2b
NA
added in 71 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) 1
added in 29 questions: Lives in Rural Area/Urban (q_143a
), Lives in Rural Area/Urban (q_144a
), Brain MRI - Tumor (q_64_2
), Brain MRI - Stroke (q_64_3
), Brain MRI - Multiple Sclerosis (q_64_4
), Brain MRI - Trauma (q_64_5
), Brain MRI - Hypoxia (q_64_6
), ...Spinal cord MRI Lumbo-sacral - Syringomyelia (q_65c_6
), Spinal cord MRI Lumbo-sacral - Other (q_65c_7
), Spinal cord MRI Lumbo-sacral - NA (q_65c_8
) No
removed in 20 questions: q_110d
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_145
, q_146
, q_147
0
added in Cognition - ECAS value (or NF, NA, NR) (q_45a
), Cognition - ECAS lower range (q_45b
), Cognition - ECAS upper range (q_45c
), ALS depression inventory value (or NF, NA, NR) (q_47a
), ALS depression inventory upper range (q_47b
), ALS depression inventory lower range (q_47c
) and Mean number of packs/day (q_88e
) q_16g
, q_24
, q_28
and q_30a
doesn't have defined level No
2
added in Brain MRI - Normal (q_64_1
), Spinal cord MRI Cervical - Normal (q_65a_1
), Spinal cord MRI Thoracic - Normal (q_65b_1
) and Spinal cord MRI Lumbo-sacral - Normal (q_65c_1
) q_26
and q_99.c1
doesn't have defined level Yes
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
No
added in Head/Neck trauma in the last 5 years (q_115
) and Head/Neck trauma > 5 years (q_116
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) q_7
) doesn't have defined level Caucassian
Lower limb
replaces value Upper limb
in Limb onset (q_18a
) q_18c
) doesn't have defined level Distal
Cervical
removed in Region1 (q_49a
) Lumbo-sacral
removed in Region2 (q_49b
) 2017-06-25
added in ALSFRS(1) Acquisition date (q_51_1.date
) NA
replaces value NA
in ALSFRS(1) Rate of decay (q_51_1.rate
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) Yes
replaces value No
in q_96a
"ghj"
added in Immunosupressor's name (q_96b
) Wt/wt (normal)
removed in q_97a
"ANTA"
removed in centr_id
34
replaces value 59
in x
ANTC0001
NA
added in 152 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) No
to number in 24 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_144c
, q_144d
, q_144e
No
added in 16 questions: Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), q_19
, q_20
, q_21
, q_30
, q_31
, ...q_40
, q_41
, q_63
No
removed in 15 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_135
, q_136
, q_138
1
added in q_38.1a
, q_38.1b
, q_38.2a
and q_38.2b
q_137
and q_99.c1
doesn't have defined level Yes
6
added in Mother´s number of siblings (q_107b
) and Father´s number of siblings (q_108b
) "No"
removed in Second Occupation (q_141
) and Second Occupation (q_142
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) "ANTC0001"
replaces value "ANTA0001"
in Control subject code (q_3b
) 2016-01-11
replaces value 2086-01-12
in Date of consultation (q_4
) 1974-04-23
replaces value 2044-04-24
in Date of birth (q_5
) q_7
) doesn't have defined level Caucassian
None
added in Which cognitive symptoms at onset (q_22
) Right
added in Handedness (q_23
) Positive
added in q_43
1996
replaces value NA
in Year of initiation of smoking (q_88b
) q_88d
) doesn't allow for tagged NA 2
0
added in Mean number of packs/day (q_88e
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) 5
added in Mother´s birth order (q_107a
) 4
added in Father´s birth order (q_108a
) "Housewife"
removed in Main Ocupation (q_139
) "ANTC"
removed in centr_id
37
replaces value 571
in x
ANTC0002
NA
added in 152 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) No
to number in 24 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_144c
, q_144d
, q_144e
No
removed in 19 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_145
, q_146
, q_147
No
added in 16 questions: Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), q_19
, q_20
, q_21
, q_30
, q_31
, ...q_40
, q_41
, q_63
1
added in Father´s birth order (q_108a
), Father´s number of siblings (q_108b
), Siblings' birth order (q_110a1
), q_38.1a
, q_38.1b
, q_38.2a
and q_38.2b
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
"no"
removed in Second Occupation (q_141
) and Second Occupation (q_142
) Large town– > 100 000
removed in Place of living (q_143
) and Place of living (q_144
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) 2016-01-01
replaces value 2086-01-02
in Date of consultation (q_4
) 1950-04-02
replaces value 2020-04-03
in Date of birth (q_5
) q_7
) doesn't have defined level Caucassian
None
added in Which cognitive symptoms at onset (q_22
) Right
added in Handedness (q_23
) Positive
added in q_43
Type II
replaces value Type I
in q_74
0
added in Mean number of packs/day (q_88e
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) q_99.c1
doesn't have defined level Yes
2
added in Mother´s birth order (q_107a
) 4
added in Mother´s number of siblings (q_107b
) 5
added in Number of siblings (q_110a2
) Yes
removed in q_111
"cook"
removed in Main Ocupation (q_139
) "ANTC"
removed in centr_id
38
replaces value 572
in x
ANTC0003
NA
added in 152 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) No
to number in 24 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_144c
, q_144d
, q_144e
No
added in 16 questions: Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), q_19
, q_20
, q_21
, q_30
, q_31
, ...q_40
, q_41
, q_63
No
removed in 16 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
1
added in Father´s birth order (q_108a
), q_38.1a
, q_38.1b
, q_38.2a
and q_38.2b
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
7
added in Father´s number of siblings (q_108b
) and Number of siblings (q_110a2
) "Farmer"
removed in Main Ocupation (q_140
) and Second Occupation (q_141
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) 2016-05-26
replaces value 2086-05-28
in Date of consultation (q_4
) 1959-11-02
replaces value 2029-11-03
in Date of birth (q_5
) q_7
) doesn't have defined level Caucassian
None
added in Which cognitive symptoms at onset (q_22
) Right
added in Handedness (q_23
) Positive
added in q_43
0
added in Mean number of packs/day (q_88e
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) q_99.c1
doesn't have defined level Yes
2
added in Mother´s birth order (q_107a
) 5
added in Mother´s number of siblings (q_107b
) 4
added in Siblings' birth order (q_110a1
) "Housewife"
removed in Main Ocupation (q_139
) "ANTC"
removed in centr_id
39
replaces value 573
in x
ANTC0004
NA
added in 152 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) No
to number in 24 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_144c
, q_144d
, q_144e
No
added in 16 questions: Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), q_19
, q_20
, q_21
, q_30
, q_31
, ...q_40
, q_41
, q_63
No
removed in 16 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
1
added in q_38.1a
, q_38.1b
, q_38.2a
and q_38.2b
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
3
added in Mother´s number of siblings (q_107b
) and Father´s birth order (q_108a
) Rural area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) 2016-05-02
replaces value 2086-05-04
in Date of consultation (q_4
) 1971-07-21
replaces value 2041-07-22
in Date of birth (q_5
) q_7
) doesn't have defined level Caucassian
None
added in Which cognitive symptoms at onset (q_22
) Right
added in Handedness (q_23
) Positive
added in q_43
0
added in Mean number of packs/day (q_88e
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) q_99.c1
doesn't have defined level Yes
2
added in Mother´s birth order (q_107a
) 6
added in Father´s number of siblings (q_108b
) 4
added in Siblings' birth order (q_110a1
) 8
added in Number of siblings (q_110a2
) "Housewife"
removed in Main Ocupation (q_139
) "ANTC"
removed in centr_id
40
replaces value 574
in x
ANTC0005
NA
added in 152 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) No
to number in 24 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_144c
, q_144d
, q_144e
No
added in 16 questions: Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), q_19
, q_20
, q_21
, q_30
, q_31
, ...q_40
, q_41
, q_63
No
removed in 15 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_135
, q_136
, q_138
1
added in Siblings' birth order (q_110a1
), q_38.1a
, q_38.1b
, q_38.2a
and q_38.2b
3
added in Mother´s birth order (q_107a
), Father´s birth order (q_108a
) and Number of siblings (q_110a2
) q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
q_137
and q_99.c1
doesn't have defined level Yes
Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) 2016-02-01
replaces value 2086-02-02
in Date of consultation (q_4
) 1968-11-15
replaces value 2038-11-17
in Date of birth (q_5
) q_7
) doesn't have defined level Caucassian
None
added in Which cognitive symptoms at onset (q_22
) Right
added in Handedness (q_23
) Positive
added in q_43
0
added in Mean number of packs/day (q_88e
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) 8
added in Mother´s number of siblings (q_107b
) 7
added in Father´s number of siblings (q_108b
) "Cook"
removed in Main Ocupation (q_139
) "Housewife"
removed in Main Ocupation (q_140
) "ANTC"
removed in centr_id
41
replaces value 575
in x
ANTC0006
NA
added in 152 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) No
to number in 24 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_144c
, q_144d
, q_144e
No
added in 16 questions: Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), q_19
, q_20
, q_21
, q_30
, q_31
, ...q_40
, q_41
, q_63
No
removed in 16 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
1
added in Mother´s birth order (q_107a
), Father´s birth order (q_108a
), Lives in Rural Area/Urban (q_143a
), Lives in Rural Area/Urban (q_144a
), q_38.1a
, q_38.1b
, q_38.2a
and q_38.2b
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) 2016-04-21
replaces value 2086-04-23
in Date of consultation (q_4
) 1970-01-01
added in Date of birth (q_5
) q_7
) doesn't have defined level Caucassian
None
added in Which cognitive symptoms at onset (q_22
) Right
added in Handedness (q_23
) Positive
added in q_43
0
added in Mean number of packs/day (q_88e
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) q_99.c1
doesn't have defined level Yes
3
added in Mother´s number of siblings (q_107b
) 5
added in Father´s number of siblings (q_108b
) 6
added in Siblings' birth order (q_110a1
) 7
added in Number of siblings (q_110a2
) "ANTC"
removed in centr_id
42
replaces value 576
in x
ANTC0007
NA
added in 152 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) No
to number in 24 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_144c
, q_144d
, q_144e
No
added in 16 questions: Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), q_19
, q_20
, q_21
, q_30
, q_31
, ...q_40
, q_41
, q_63
No
removed in 16 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
1
added in Mother´s birth order (q_107a
), q_38.1a
, q_38.1b
, q_38.2a
and q_38.2b
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
3
added in Father´s birth order (q_108a
) and Father´s number of siblings (q_108b
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) 2016-01-01
replaces value 2086-01-02
in Date of consultation (q_4
) 1960-05-01
replaces value 2030-05-03
in Date of birth (q_5
) q_7
) doesn't have defined level Caucassian
None
added in Which cognitive symptoms at onset (q_22
) Right
added in Handedness (q_23
) Positive
added in q_43
0
added in Mean number of packs/day (q_88e
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) q_99.c1
doesn't have defined level Yes
11
added in Mother´s number of siblings (q_107b
) "Housewife"
removed in Main Ocupation (q_139
) "ANTC"
removed in centr_id
43
replaces value 577
in x
ANTC0008
NA
added in 152 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) No
to number in 24 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_144c
, q_144d
, q_144e
No
removed in 19 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_145
, q_146
, q_147
No
added in 16 questions: Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), q_19
, q_20
, q_21
, q_30
, q_31
, ...q_40
, q_41
, q_63
1
added in q_38.1a
, q_38.1b
, q_38.2a
and q_38.2b
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
4
added in Mother´s birth order (q_107a
) and Father´s number of siblings (q_108b
) 2
added in Father´s birth order (q_108a
) and Siblings' birth order (q_110a1
) 3
added in Number of siblings (q_110a2
) and How long moderate sport activity 1 (q_112a_1c
) Large town– > 100 000
removed in Place of living (q_143
) and Place of living (q_144
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) 2016-02-10
replaces value 2086-02-11
in Date of consultation (q_4
) 1975-10-03
replaces value 2045-10-04
in Date of birth (q_5
) q_7
) doesn't have defined level Caucassian
None
added in Which cognitive symptoms at onset (q_22
) Right
added in Handedness (q_23
) Positive
added in q_43
0
added in Mean number of packs/day (q_88e
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) q_99.c1
doesn't have defined level Yes
6
added in Mother´s number of siblings (q_107b
) Fast walking
added in Type of moderate sport activity 1 (q_112a_1a
) "Tourism"
removed in Main Ocupation (q_139
) "Insurer"
removed in Main Ocupation (q_140
) "ANTC"
removed in centr_id
44
replaces value 578
in x
ANTC0009
NA
added in 152 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) No
to number in 24 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_144c
, q_144d
, q_144e
No
added in 16 questions: Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), q_19
, q_20
, q_21
, q_30
, q_31
, ...q_40
, q_41
, q_63
No
removed in 16 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
1
added in Father´s birth order (q_108a
), Father´s number of siblings (q_108b
), Lives in Rural Area/Urban (q_143a
), Lives in Rural Area/Urban (q_144a
), q_38.1a
, q_38.1b
, q_38.2a
and q_38.2b
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
4
added in Mother´s birth order (q_107a
) and Mother´s number of siblings (q_107b
) 5
added in Siblings' birth order (q_110a1
) and Number of siblings (q_110a2
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) 2016-02-26
replaces value 2086-02-27
in Date of consultation (q_4
) 1959-01-01
replaces value 2029-01-02
in Date of birth (q_5
) q_7
) doesn't have defined level Caucassian
None
added in Which cognitive symptoms at onset (q_22
) Right
added in Handedness (q_23
) Positive
added in q_43
0
added in Mean number of packs/day (q_88e
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) q_99.c1
doesn't have defined level Yes
"ANTC"
removed in centr_id
45
replaces value 579
in x
ANTC0010
NA
added in 152 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) No
to number in 24 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_144c
, q_144d
, q_144e
No
added in 16 questions: Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), q_19
, q_20
, q_21
, q_30
, q_31
, ...q_40
, q_41
, q_63
No
removed in 16 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
1
added in Siblings' birth order (q_110a1
), Lives in Rural Area/Urban (q_143a
), Lives in Rural Area/Urban (q_144a
), q_38.1a
, q_38.1b
, q_38.2a
and q_38.2b
q_88b
) and Year of interruption of smoking (q_88d
) doesn't allow for tagged NA 2
5
added in Mother´s birth order (q_107a
) and Number of siblings (q_110a2
) 4
added in Father´s number of siblings (q_108b
) and Number of children (q_110a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) 2016-08-12
replaces value 2086-08-14
in Date of consultation (q_4
) 1974-05-04
replaces value 2044-05-05
in Date of birth (q_5
) q_7
) doesn't have defined level Caucassian
None
added in Which cognitive symptoms at onset (q_22
) Right
added in Handedness (q_23
) Positive
added in q_43
0
added in Mean number of packs/day (q_88e
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) q_99.c1
doesn't have defined level Yes
10
added in Mother´s number of siblings (q_107b
) 3
added in Father´s birth order (q_108a
) "ANTC"
removed in centr_id
46
replaces value 580
in x
ANTC0011
NA
added in 152 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) No
to number in 23 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_144c
, q_144d
, q_144e
No
added in 16 questions: Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), q_19
, q_20
, q_21
, q_30
, q_31
, ...q_40
, q_41
, q_63
No
removed in 14 questions: q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, q_129
, ...q_136
, q_137
, q_138
1
added in Father´s birth order (q_108a
), Siblings' birth order (q_110a1
), q_38.1a
, q_38.1b
, q_38.2a
and q_38.2b
q_133
, q_134
and q_99.c1
doesn't have defined level Yes
2
added in Mother´s birth order (q_107a
) and Father´s number of siblings (q_108b
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) 2016-03-11
replaces value 2086-03-13
in Date of consultation (q_4
) 1979-01-18
replaces value 2049-01-19
in Date of birth (q_5
) q_7
) doesn't have defined level Caucassian
None
added in Which cognitive symptoms at onset (q_22
) Right
added in Handedness (q_23
) Positive
added in q_43
2
replaces value NA
in Year of initiation of smoking (q_88b
) q_88d
) doesn't allow for tagged NA 2
0
added in Mean number of packs/day (q_88e
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) 9
added in Mother´s number of siblings (q_107b
) 4
added in Number of siblings (q_110a2
) Yes
to number in q_121a
"Tourism"
removed in Main Ocupation (q_139
) "No"
removed in Second Occupation (q_141
) "ANTC"
removed in centr_id
47
replaces value 581
in x
ANTC0012
NA
added in 152 questions: Regular specific diet - No (q_114a
), Regular specific diet - Mediterranean (q_114b
), Regular specific diet - Vegetarian (q_114c
), Regular specific diet - Vegan (q_114d
), Regular specific diet - Gluten-free (q_114e
), Regular specific diet - High protein (q_114f
), Regular specific diet - Low carbohydrate (q_114g
), ...Metastasis - Colon (q_85b_7
), Metastasis - Rectum (q_85b_8
), Metastasis - other Abdominal (q_85b_9
) No
to number in 22 questions: q_117a
, q_117b
, q_117c
, q_118a
, q_118b
, q_118c
, q_119a
, ...q_144c
, q_144d
, q_144e
No
removed in 19 questions: q_110d
, q_123
, q_124
, q_125
, q_126
, q_127
, q_128
, ...q_145
, q_146
, q_147
No
added in 16 questions: Head/Neck trauma in the last 5 years (q_115
), Head/Neck trauma > 5 years (q_116
), q_19
, q_20
, q_21
, q_30
, q_31
, ...q_40
, q_41
, q_63
1
added in q_38.1a
, q_38.1b
, q_38.2a
and q_38.2b
q_133
and q_99.c1
doesn't have defined level Yes
Yes
to number in q_120b
and q_120c
"Technician"
removed in Main Ocupation (q_139
) and Second Occupation (q_141
) Large town– > 100 000
removed in Place of living (q_143
) and Place of living (q_144
) Urban area
to number in Lives in Rural Area/Urban (q_143a
) and Lives in Rural Area/Urban (q_144a
) Antalya
added in Medical facility (facility_id
) Hilmi Uysal
added in Physician recording the data (person_id
) 2017-01-12
replaces value 2087-01-14
in Date of consultation (q_4
) 1967-01-01
replaces value 2037-01-02
in Date of birth (q_5
) q_7
) doesn't have defined level Caucassian
None
added in Which cognitive symptoms at onset (q_22
) Right
added in Handedness (q_23
) Positive
added in q_43
Type II
replaces value Type I
in q_74
q_88b
) doesn't allow for tagged NA 2
0
added in Mean number of packs/day (q_88e
) 2018-02-20
added in Date of initiation of Riluzole (q_91b
) "ANTC"
removed in centr_id
48
replaces value 582
in x
The paragraph below shows differences in data layout between the datasets
""
replaces value "Place of living"
for q_143 and q_144 ""
replaces value "Lives in Rural Area/Urban"
for q_143a and q_144a ""
replaces value "Medical facility"
for facility_id ""
replaces value "Physician recording the data"
for person_id "Familial history of ALS"
replaces value "How many family members 1 had a history of ALS"
for q_100a_2 "Familial history of ALS"
replaces value "How many family members 2 had a history of ALS"
for q_100b_2 "Familial history of ALS"
replaces value "How many family members 3 had a history of ALS"
for q_100c_2 "Familial history of FTD"
replaces value "How many family members 1 had a history of FTD"
for q_101a_2 "Familial history of FTD"
replaces value "How many family members 2 had a history of FTD"
for q_101b_2 "Familial history of FTD"
replaces value "How many family members 3 had a history of FTD"
for q_101c_2 "Familial history of Alzheimer disease"
replaces value "How many family members 1 had a history of Alzheimer disease"
for q_102a_2 "Familial history of Alzheimer disease"
replaces value "How many family members 2 had a history of Alzheimer disease"
for q_102b_2 "Familial history of Alzheimer disease"
replaces value "How many family members 3 had a history of Alzheimer disease"
for q_102c_2 "Familial history of Parkinson disease"
replaces value "How many family members 1 had a history of Parkinson disease"
for q_103a_2 "Family history of multiple sclerosis"
replaces value "How many family members 1 had a history of multiple scrlerosis"
for q_104a_2 "Family history of multiple sclerosis"
replaces value "How many family members 2 had a history of multiple scrlerosis"
for q_104b_2 "Parents’ and siblings´ causes of death"
replaces value "Age of family member 1 at the moment of death"
for q_106_1d "Parents’ and siblings´ causes of death"
replaces value "Age of family member 2 at the moment of death"
for q_106_2d "Parents’ and siblings´ causes of death"
replaces value "Age of family member 3 at the moment of death"
for q_106_3d "Parents’ and siblings´ causes of death"
replaces value "Age of family member 4 at the moment of death"
for q_106_4d "Mother´s number of siblings and birth order"
replaces value "Mother´s birth order"
for q_107a "Mother´s number of siblings and birth order"
replaces value "Mother´s number of siblings"
for q_107b "Father´s number of siblings and birth order"
replaces value "Father´s birth order"
for q_108a "Father´s number of siblings and birth order"
replaces value "Father´s number of siblings"
for q_108b ""
replaces value "Father's Place of birth"
for q_10a ""
replaces value "Father's Place of birth characteristics"
for q_10b ""
replaces value "Date of 1st Symptoms"
for q_11 "Number of siblings and birth order"
replaces value "Siblings' birth order"
for q_110a1 "Number of siblings and birth order"
replaces value "Number of siblings"
for q_110a2 "Moderate aerobic activity (such as fast walking, swimming) >150 min/week"
replaces value "How long moderate sport activity 1"
for q_112a_1c "Moderate aerobic activity (such as fast walking, swimming) >150 min/week"
replaces value "How long moderate sport activity 2"
for q_112a_2c "Moderate aerobic activity (such as fast walking, swimming) >150 min/week"
replaces value "How long moderate sport activity 3"
for q_112a_3c "Moderate aerobic activity (such as fast walking, swimming) >150 min/week"
replaces value "How long moderate sport activity 4"
for q_112a_4c "Vigorous aerobic activity (such as running or aerobic dancing) >75 min/week"
replaces value "How long vigorous sport activity 1"
for q_112b_1c "Vigorous aerobic activity (such as running or aerobic dancing) >75 min/week"
replaces value "How long vigorous sport activity 2"
for q_112b_2c "Vigorous aerobic activity (such as running or aerobic dancing) >75 min/week"
replaces value "How long vigorous sport activity 3"
for q_112b_3c "Mild physical exercise <75 min/week, >1 year"
replaces value "How long mild sport activity 1"
for q_113_1c "Mild physical exercise <75 min/week, >1 year"
replaces value "How long mild sport activity 2"
for q_113_2c ""
replaces value "Regular specific diet - No"
for q_114a ""
replaces value "Regular specific diet - Mediterranean"
for q_114b ""
replaces value "Regular specific diet - Vegetarian"
for q_114c ""
replaces value "Regular specific diet - Vegan"
for q_114d ""
replaces value "Regular specific diet - Gluten-free"
for q_114e ""
replaces value "Regular specific diet - High protein"
for q_114f ""
replaces value "Regular specific diet - Low carbohydrate"
for q_114g ""
replaces value "Regular specific diet - Paleo (High-protein, high-fat, low-carbohydrate)"
for q_114h ""
replaces value "Date of 1st Medical Consultation"
for q_12 ""
replaces value "Date of Diagnosis"
for q_13 ""
replaces value "Date of Invasive ventilation"
for q_14 ""
replaces value "Date of Death"
for q_15 "Time gap between first-second specialist (months)"
replaces value "Time gap between first-second specialist"
for q_151 "Order of specialists that observed the patient"
replaces value "Order of specialist 1 that observed the patient"
for q_154a_1 "Order of specialists that observed the patient"
replaces value "Order of specialist 2 that observed the patient"
for q_154a_2 "Order of specialists that observed the patient"
replaces value "Order of specialist 3 that observed the patient"
for q_154a_3 "Order of specialists that observed the patient"
replaces value "Order of specialist 4 that observed the patient"
for q_154a_4 "Order of specialists that observed the patient"
replaces value "Order of specialist 5 that observed the patient"
for q_154a_5 "Order of specialists that observed the patient"
replaces value "Order of specialist 6 that observed the patient"
for q_154a_6 "Order of specialists that observed the patient"
replaces value "Order of specialist 7 that observed the patient"
for q_154a_7 "Order of specialists that observed the patient"
replaces value "Other type of specialist 7 that observed the patient"
for q_154c_7 ""
replaces value "Did specialist 1 made diagnosis"
for q_154d_1 ""
replaces value "Did specialist 2 made diagnosis"
for q_154d_2 ""
replaces value "Did specialist 3 made diagnosis"
for q_154d_3 ""
replaces value "Did specialist 4 made diagnosis"
for q_154d_4 ""
replaces value "Did specialist 5 made diagnosis"
for q_154d_5 ""
replaces value "Did specialist 6 made diagnosis"
for q_154d_6 ""
replaces value "Did specialist 7 made diagnosis"
for q_154d_7 "Time gap between first medical observation and the specialist who made the diagnosis (months)"
replaces value "Time gap between first medical observation and diagnosis"
for q_155 "Generalized onset"
replaces value ""
for q_16g ""
replaces value "UMN vs LMN manifestation at onset"
for q_17 ""
replaces value "Limb onset"
for q_18a ""
replaces value "Predominant side"
for q_18b ""
replaces value "Which cognitive symptoms at onset"
for q_22 ""
replaces value "Handedness"
for q_23 "Bulbar region"
replaces value ""
for q_24 "Upper Limbs"
replaces value ""
for q_26 "Lower Limbs"
replaces value ""
for q_28 "Axial muscles"
replaces value ""
for q_30a ""
replaces value "Alternative diagnosis"
for q_36b ""
replaces value "Sensory changes"
for q_39 ""
replaces value "Date of consultation"
for q_4 "Postural instability - NURT"
replaces value ""
for q_42 ""
replaces value "Cognition - Qualitative evaluation"
for q_44 "Cognition – ECAS observed value (normal range)"
replaces value "Cognition - ECAS value (or NF, NA, NR)"
for q_45a "Cognition – ECAS observed value (normal range)"
replaces value "Cognition - ECAS lower range"
for q_45b "Cognition – ECAS observed value (normal range)"
replaces value "Cognition - ECAS upper range"
for q_45c ""
replaces value "Depression - Qualitative evaluation"
for q_46 "Depression - ALS depression inventory"
replaces value "ALS depression inventory value (or NF, NA, NR)"
for q_47a "Depression - ALS depression inventory"
replaces value "ALS depression inventory upper range"
for q_47b "Depression - ALS depression inventory"
replaces value "ALS depression inventory lower range"
for q_47c "Timing of transition from region 1 to 2 (months)"
replaces value "Timing of transition from region 1 to 2"
for q_49c ""
replaces value "Date of birth"
for q_5 "Timing of transition from region 2 to 3 (months)"
replaces value "Timing of transition from region 2 to 3"
for q_50b ""
replaces value "ALSFRS(1) Acquisition date"
for q_51_1.date "ALSFRS(1) Score"
replaces value "ALSFRS-R total"
for q_51_1.score ""
replaces value "ALSFRS(2) Acquisition date"
for q_51_2.date "ALSFRS-R history"
replaces value "ALSFRS-R take 2 total"
for q_51_2.score ""
replaces value "Gender"
for q_6 ""
replaces value "Brain MRI - Normal"
for q_64_1 ""
replaces value "Brain MRI - Tumor"
for q_64_2 ""
replaces value "Brain MRI - Stroke"
for q_64_3 ""
replaces value "Brain MRI - Multiple Sclerosis"
for q_64_4 ""
replaces value "Brain MRI - Trauma"
for q_64_5 ""
replaces value "Brain MRI - Hypoxia"
for q_64_6 ""
replaces value "Brain MRI - NA"
for q_64_7 ""
replaces value "Spinal cord MRI Cervical - Normal"
for q_65a_1 ""
replaces value "Spinal cord MRI Cervical - Tumor"
for q_65a_2 ""
replaces value "Spinal cord MRI Cervical - Stenosis"
for q_65a_3 ""
replaces value "Spinal cord MRI Cervical - Myelitis"
for q_65a_4 ""
replaces value "Spinal cord MRI Cervical - Trauma"
for q_65a_5 ""
replaces value "Spinal cord MRI Cervical - Syringomyelia"
for q_65a_6 ""
replaces value "Spinal cord MRI Cervical - Other"
for q_65a_7 ""
replaces value "Spinal cord MRI Cervical - NA"
for q_65a_8 ""
replaces value "Spinal cord MRI Thoracic - Normal"
for q_65b_1 ""
replaces value "Spinal cord MRI Thoracic - Tumor"
for q_65b_2 ""
replaces value "Spinal cord MRI Thoracic - Stenosis"
for q_65b_3 ""
replaces value "Spinal cord MRI Thoracic - Myelitis"
for q_65b_4 ""
replaces value "Spinal cord MRI Thoracic - Trauma"
for q_65b_5 ""
replaces value "Spinal cord MRI Thoracic - Syringomyelia"
for q_65b_6 ""
replaces value "Spinal cord MRI Thoracic - Other"
for q_65b_7 ""
replaces value "Spinal cord MRI Thoracic - NA"
for q_65b_8 ""
replaces value "Spinal cord MRI Lumbo-sacral - Normal"
for q_65c_1 ""
replaces value "Spinal cord MRI Lumbo-sacral - Tumor"
for q_65c_2 ""
replaces value "Spinal cord MRI Lumbo-sacral - Stenosis"
for q_65c_3 ""
replaces value "Spinal cord MRI Lumbo-sacral - Myelitis"
for q_65c_4 ""
replaces value "Spinal cord MRI Lumbo-sacral - Trauma"
for q_65c_5 ""
replaces value "Spinal cord MRI Lumbo-sacral - Syringomyelia"
for q_65c_6 ""
replaces value "Spinal cord MRI Lumbo-sacral - Other"
for q_65c_7 ""
replaces value "Spinal cord MRI Lumbo-sacral - NA"
for q_65c_8 ""
replaces value "Ethinicity"
for q_7 "Diabetes – type I / II"
replaces value ""
for q_74 ""
replaces value "Primary cancer - Brain"
for q_85a_1 ""
replaces value "Primary cancer - Prostate"
for q_85a_10 ""
replaces value "Primary cancer - Uterus"
for q_85a_11 ""
replaces value "Primary cancer - other Plevic"
for q_85a_12 ""
replaces value "Primary cancer - Spine"
for q_85a_13 ""
replaces value "Primary cancer - UL bone & sarcomas"
for q_85a_14 ""
replaces value "Primary cancer - LL bone & sarcomas"
for q_85a_15 ""
replaces value "Primary cancer - Skin"
for q_85a_16 ""
replaces value "Primary cancer - Leukemia"
for q_85a_17 ""
replaces value "Primary cancer - Lymphoma"
for q_85a_18 ""
replaces value "Primary cancer - other Blood"
for q_85a_19 ""
replaces value "Primary cancer - Neck"
for q_85a_2 ""
replaces value "Primary cancer - Breast"
for q_85a_3 ""
replaces value "Primary cancer - Lung"
for q_85a_4 ""
replaces value "Primary cancer - other Thoracic"
for q_85a_5 ""
replaces value "Primary cancer - Gastric"
for q_85a_6 ""
replaces value "Primary cancer - Colon"
for q_85a_7 ""
replaces value "Primary cancer - Rectum"
for q_85a_8 ""
replaces value "Primary cancer - other Abdominal"
for q_85a_9 ""
replaces value "Metastasis - Brain"
for q_85b_1 ""
replaces value "Metastasis - Prostate"
for q_85b_10 ""
replaces value "Metastasis - Uterus"
for q_85b_11 ""
replaces value "Metastasis - other Plevic"
for q_85b_12 ""
replaces value "Metastasis - Spine"
for q_85b_13 ""
replaces value "Metastasis - UL bone & sarcomas"
for q_85b_14 ""
replaces value "Metastasis - LL bone & sarcomas"
for q_85b_15 ""
replaces value "Metastasis - Skin"
for q_85b_16 ""
replaces value "Metastasis - Leukemia"
for q_85b_17 ""
replaces value "Metastasis - Lymphoma"
for q_85b_18 ""
replaces value "Metastasis - other Blood"
for q_85b_19 ""
replaces value "Metastasis - Neck"
for q_85b_2 ""
replaces value "Metastasis - Breast"
for q_85b_3 ""
replaces value "Metastasis - Lung"
for q_85b_4 ""
replaces value "Metastasis - other Thoracic"
for q_85b_5 ""
replaces value "Metastasis - Gastric"
for q_85b_6 ""
replaces value "Metastasis - Colon"
for q_85b_7 ""
replaces value "Metastasis - Rectum"
for q_85b_8 ""
replaces value "Metastasis - other Abdominal"
for q_85b_9 "Date of initiation of smoking (year)"
replaces value "Year of initiation of smoking"
for q_88b "Date of interruption of smoking (year)"
replaces value "Year of interruption of smoking"
for q_88d ""
replaces value "Place of birth"
for q_8a ""
replaces value "Place of birth characteristics"
for q_8b ""
replaces value "Date of initiation of Riluzole"
for q_91b ""
replaces value "Abnormal C9orf72 repeat-expansion"
for q_98_1 ""
replaces value "TBK1 mutation"
for q_98_2a ""
replaces value "Other gene 1"
for q_99.a1 ""
replaces value "Other gene 2"
for q_99.a2 "Was the patient included in other genomic studies"
replaces value ""
for q_99.c1 ""
replaces value "Mother's Place of birth"
for q_9a ""
replaces value "Mother's Place of birth characteristics"
for q_9b ""
replaces value "1="No";2="Yes""
for 155 questions: q_114a, q_114b, q_114c, q_114d, q_114e, q_114f, q_114g, ...q_85b_7, q_85b_8, q_85b_9 ""
replaces value "NA(c)="NR";NA(a)="NA";NA(b)="NF""
for q_88b, q_88d and q_88e ""
replaces value "1="Rural area";2="Urban area""
for q_143a and q_144a ""
replaces value "NA(a)="NA";NA(d)="unknown""
for q_49c and q_50b ""
replaces value "0="Loss of useful speech";1="Speech combined with nonvocal communication";2="Intelligible with repeating";3="Detectable speech disturbances";4="Normal speech processes""
for q_51_1.1 and q_51_2.1 ""
replaces value "0="Significant difficulty, considering using mechanical respiratory support";1="Occurs at rest Shortness of breath at rest, difficulty breathing when either sitting or lying";2="Occurs with >= 1 of the following: eating, bathing, dressing (ADL)";3="Occurs when walking";4="None""
for q_51_1.10 and q_51_2.10 ""
replaces value "0="Unable to sleep";1="Can only sleep sitting up";2="Needs extra pillows in order to sleep (>2)";3="Some difficulty sleeping at night due to shortness of breath (does not routinely use more than two pillows)";4="None""
for q_51_1.11 and q_51_2.11 ""
replaces value "0="Invasive mechanical ventilation by intubation or tracheostomy";1="Continuous use of BiPAP during the night and day";2="Continuous use of BiPAP during the night";3="Intermittent use of BiPAP";4="None""
for q_51_1.12 and q_51_2.12 ""
replaces value "0="Marked drooling; requires constant tissue or handkerchief";1="Marked excess of saliva with some drooling";2="Moderately excessive saliva; may have minimal drooling";3="Slight but definite excess of saliva in mouth; may have nightime drooling";4="Normal""
for q_51_1.2 and q_51_2.2 ""
replaces value "0="NPO (exclus. parenteral or enteral feeding)";1="Needs supplemental tube feeding";2="Dietary consistency changes";3="Early eating problems - occasional choking";4="Normal eating habits""
for q_51_1.3 and q_51_2.3 ""
replaces value "0="Unable to grip pen";1="Able to grip pen but unable to write";2="Not all words are legible";3="Slow or sloppy; all words are legible";4="Normal""
for q_51_1.4 and q_51_2.4 ""
replaces value "0="Needs to be fed";1="Food must be cut by someone, but can still feed slowly";2="Can cut most foods, although clumsy and slow; some help needed";3="Somewhat slow and clumsy, but no help needed";4="Normal""
for q_51_1.5 and q_51_2.5 ""
replaces value "0="Total dependence";1="Needs attendant for self-care";2="Intermittent assistance or substitute methods";3="Independent and complete self-care with effort of decreased efficiency";4="Normal function""
for q_51_1.6 and q_51_2.6 ""
replaces value "0="Helpless";1="Can initiate, but not turn or adjust sheets alone";2="Can turn alone or adjust sheets, but with great difficulty";3="Somewhat slow and clumsy, but no help needed";4="Normal""
for q_51_1.7 and q_51_2.7 ""
replaces value "0="No purposeful leg movement";1="Nonambulatory functional movement";2="Walks with assistance";3="Early ambulation difficulties";4="Normal""
for q_51_1.8 and q_51_2.8 ""
replaces value "0="Cannot do";1="Needs assistance";2="Mild unsteadiness or fatigue";3="Slow";4="Normal""
for q_51_1.9 and q_51_2.9 "1="Antalya";2="Hannover";3="Jena";4="Lisbon";5="Pisa";6="Warsaw""
replaces value ""
for facility_id "1="Annalisa Logerfo";2="B Stubbendorf";3="Hilmi Uysal";4="K Szacka";5="Mamede de Carvalho";6="Susanne Petri-Mals""
replaces value ""
for person_id ""
replaces value "NA(a)="NA";NA(b)="NF";NA(c)="NR""
for q_151 ""
replaces value "NA(a)="NA";NA(b)="NF""
for q_155 "1="No answer required for this field""
replaces value "1="No answer required for this field";2="NA""
for q_156 ""
replaces value "1="Positive";2="Negative";NA(b)="Positive";NA(b)="Negative""
for q_42 "1="No";2="Head";3="Neck";4="Head and neck""
replaces value "1="No";2="Head";3="Neck";4="Head and neck";5="NA";6="Yes""
for q_87b integer
replaces value nominal
for 157 questions: q_114a, q_114b, q_114c, q_114d, q_114e, q_114f, q_114g, ...q_85b_7, q_85b_8, q_85b_9 integer
added for 45 questions: q_100a_2, q_100b_2, q_100c_2, q_100d_2, q_101a_2, q_101b_2, q_101c_2, ...q_47c, q_51_2.score, x integer
replaces value labelled
for 24 questions: q_51_1.1, q_51_1.10, q_51_1.11, q_51_1.12, q_51_1.2, q_51_1.3, q_51_1.4, ...q_51_2.7, q_51_2.8, q_51_2.9 integer
replaces value real number
for 17 questions: q_107a, q_107b, q_108a, q_108b, q_110a1, q_110a2, q_112a_1c, ...q_88b, q_88d, q_88e nominal
replaces value text
for facility_id and person_id integer
replaces value text
for q_154c_7 real number
added for q_51_1.score NA
removed in Theoretical min for q_4 and q_5 NA
added in Theoretical min for q_51_1.score "F"
added in measure_type for q_16g, q_24, q_26, q_28, q_30a, q_74 and q_99.c1 "I"
added in measure_type for q_51_1.score FALSE
replaces value TRUE
in Force only values that are labelled for 168 questions: q_11, q_114a, q_114b, q_114c, q_114d, q_114e, q_114f, ...q_85b_7, q_85b_8, q_85b_9 TRUE
replaces value FALSE
in Force only values that are labelled for facility_id, person_id and q_51_1.score "FALSE"
added in Force only integral values for q_74 NA
removed in Theoretical max for q_4 and q_5 "FALSE"
replaces value "1"
in Force only non-missing values for facility_id, person_id, q_11, q_13, q_4, q_5, q_6 and q_7 0
removed in warnings_context for 14 questions: facility_id, person_id, q_107a, q_107b, q_108a, q_108b, q_110a1, ...q_113_1c, q_151, q_155 Add the following code to your website.
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