ID

28128

Beschreibung

NINDS Common Data Elements, Multiple Sclerosis Diagnosis and Disease Characteristics Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

Link

https://www.commondataelements.ninds.nih.gov/

Stichworte

Versionen (4)
  1. 31.07.16 31.07.16 -
  2. 20.12.17 20.12.17 -
  3. 27.02.18 27.02.18 -
  4. 20.06.18 20.06.18 - Julian Varghese
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NINDS Common Data Elements

Hochgeladen am

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NINDS CDE Diagnosis and Disease Characteristics Multiple Sclerosis

Englisch

Diagnosis and Disease Characteristics

1 Formulare  
Diagnosis and Disease Characteristics
Beschreibung

Diagnosis and Disease Characteristics

Alias
UMLS CUI-1
C0011900
UMLS CUI-3
C0599878
Study ID
Beschreibung

Study ID

Datentyp

integer

Alias
UMLS CUI [1]
C2826693
Study site name
Beschreibung

Study site name

Datentyp

text

Alias
UMLS CUI [1]
C2825164
Subject ID
Beschreibung

Subject ID

Datentyp

integer

Alias
UMLS CUI [1]
C2348585
1. What is the current diagnosis? (choose only one)
Beschreibung

current diagnosis

Datentyp

text

Alias
UMLS CUI [1]
C0011900
b. Improvement by clinical exam, MRI or both after acute event
Beschreibung

clinical exam of symptoms; MRI

Datentyp

boolean

Alias
UMLS CUI [1,1]
C1456356
UMLS CUI [1,2]
C1457887
UMLS CUI [2]
C0024485
b. Multifocal lesions predominantly involving white matter
Beschreibung

Multifocal white matter lesions

Datentyp

boolean

Alias
UMLS CUI [1]
C2751845
b. New event of ADEM, 3 or more months with recurrence of the initial symptoms and signs (recurrent ADEM)
Beschreibung

ADEM

Datentyp

boolean

Alias
UMLS CUI [1]
C0014059
b. ADEM followed by a new clinical event also meeting criteria for ADEM, but involving anatomic areas of the CNS
Beschreibung

ADEM

Datentyp

boolean

Alias
UMLS CUI [1]
C0014059
5. Clinical course – Other CNS demyelinating disorder: a. Specify disorder:
Beschreibung

Clinical course CNS demyelinating disorder

Datentyp

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0011302
b. Type:
Beschreibung

types Clinical course CNS demyelinating disorder

Datentyp

text

Alias
UMLS CUI [1,1]
C1114762
UMLS CUI [1,2]
C0449259
UMLS CUI [1,3]
C0011302
Other, specify:
Beschreibung

Other

Datentyp

text

Alias
UMLS CUI [1]
C0205394
2. Clinical Course - MS
Beschreibung

2. Clinical Course - MS

Alias
UMLS CUI-1
C0449259
UMLS CUI-2
C0026769
a. Onset Course:
Beschreibung

Clinical course MS

Datentyp

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0026769
UMLS CUI [1,3]
C0277793
b. Current Disease Course:
Beschreibung

Disease Course Multiple Sclerosis, Relapsing-Remitting

Datentyp

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0026769
3. Clinical Course - NMO
Beschreibung

3. Clinical Course - NMO

Alias
UMLS CUI-1
C0449259
UMLS CUI-2
C0027873
a. Type:
Beschreibung

Clinical course Neuromyelitis Optica

Datentyp

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0027873
i. Optic neuritis, specify laterality:
Beschreibung

b. If one of the NMO spectrum disorder types above, choose all that apply:

Datentyp

text

Alias
UMLS CUI [1,1]
C0029134
UMLS CUI [1,2]
C0925205
ii. Acute myelitis, specify involvement of which segments (Cervical)
Beschreibung

Acute myelitis

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0270626
UMLS CUI [1,2]
C0270627
UMLS CUI [1,3]
C0205064
ii. Acute myelitis, specify involvement of which segments (Thoracic )
Beschreibung

Acute myelitis

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0270626
UMLS CUI [1,2]
C0270627
UMLS CUI [1,3]
C0817096
ii. Acute myelitis, specify involvement of which segments (Lumbar )
Beschreibung

Acute myelitis

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0270626
UMLS CUI [1,2]
C0270627
UMLS CUI [1,3]
C0024090
iii.
Beschreibung

diagnostic criteria NMO

Datentyp

text

Alias
UMLS CUI [1,1]
C0241224
UMLS CUI [1,2]
C0024485
UMLS CUI [2,1]
C0003241
UMLS CUI [2,2]
C3266851
UMLS CUI [3]
C0027873
c. Time between onset of first optic neuritis and first myelitis:
Beschreibung

onset time optic neuritis myelitis

Datentyp

integer

Maßeinheiten
  • months
Alias
UMLS CUI [1,1]
C0449244
UMLS CUI [1,2]
C0029134
UMLS CUI [1,3]
C0026975
months
4. Clinical Course - ADEM
Beschreibung

4. Clinical Course - ADEM

Alias
UMLS CUI-1
C0449259
UMLS CUI-2
C0014059
a. Type:
Beschreibung

Clinical course ADEM

Datentyp

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0014059
Other, specify:
Beschreibung

Other

Datentyp

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0205394
b. Presence of encephalopathy (behavioural change or alteration in consciousness)
Beschreibung

encephalopathy

Datentyp

boolean

Alias
UMLS CUI [1]
C0085584
5. Clinical course – Other CNS demyelinating disorder
Beschreibung

5. Clinical course – Other CNS demyelinating disorder

Alias
UMLS CUI-1
C0205394
UMLS CUI-2
C0011302
a. Specify disorder:
Beschreibung

Other

Datentyp

text

Alias
UMLS CUI [1,1]
C0205394
UMLS CUI [1,2]
C0011302
b. Type:
Beschreibung

Clinical course ADEM

Datentyp

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0205394
UMLS CUI [1,3]
C0011302
6. (For MS patients ONLY) Indicate which diagnostic criteria the patient fulfills: (choose only one)
Beschreibung

6. (For MS patients ONLY) Indicate which diagnostic criteria the patient fulfills: (choose only one)

Alias
UMLS CUI-1
C0026769
UMLS CUI-2
C0679228
RRMS:
Beschreibung

Relapsing remitting multiple sclerosis

Datentyp

text

Alias
UMLS CUI [1,1]
C0751967
UMLS CUI [1,2]
C0679228
Dissemination in space, demonstrated by
Beschreibung

Dissemination in space

Datentyp

text

Alias
UMLS CUI [1,1]
C0026769
UMLS CUI [1,2]
C0205221
UMLS CUI [1,3]
C1515974
Dissemination in time, demonstrated by:
Beschreibung

Dissemination in time

Datentyp

text

Alias
UMLS CUI [1,1]
C0026769
UMLS CUI [1,2]
C0205221
UMLS CUI [1,3]
C0040223
Dissemination in space and time, demonstrated by: For DIS: ≥ 1 T2 lesion in at least 2 of 4 MS-typical regions of the CNS (periventricular, juxtacortical, infratentorial, or spinal cord); and For DIT:
Beschreibung

Dissemination in space and time

Datentyp

text

Alias
UMLS CUI [1,1]
C0026769
UMLS CUI [1,2]
C0205221
UMLS CUI [1,3]
C0040223
UMLS CUI [1,4]
C1515974
PPMS: 1 year of disease progression (retrospectively or prospectively determined) plus 2 of 3 of the following: Evidence for DIS in the brain based on ≥ 1 T2 lesions in the MS-characteristic (periventricular, juxtacortical, or infratentorial) regions Evidence for DIS in the spinal cord based on ≥ 2 T2 lesions in the cord Positive CSF (isoelectric focusing evidence of oligoclonal bands and/or elevated IgG index)
Beschreibung

Multiple Sclerosis, Primary Progressive

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0751964
UMLS CUI [1,2]
C0679228
SPMS: Initial RR disease course followed by progression with or without occasional relapses, minor remissions, and plateaus
Beschreibung

Multiple Sclerosis, Secondary Progressive

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0751965
UMLS CUI [1,2]
C0679228
PRMS: Progressive disease from onset, with clear acute relapses, with or without full recovery; periods between relapses characterized by continuing progression
Beschreibung

Multiple Sclerosis, Progressive Relapsing

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0393666
UMLS CUI [1,2]
C0679228
7. Onset History
Beschreibung

7. Onset History

Alias
UMLS CUI-1
C0262926
UMLS CUI-2
C0277793
a. Year of first diagnosis:
Beschreibung

year of diagnosis

Datentyp

partialDate

Maßeinheiten
  • year
Alias
UMLS CUI [1]
C2316983
year
b. Did occurrence of onset clinical event occur:
Beschreibung

disease onset

Datentyp

text

Alias
UMLS CUI [1]
C0574845
c. Indicate first onset was (choose only one):
Beschreibung

disease onset first unifocal lesion multifocal lesion

Datentyp

text

Alias
UMLS CUI [1,1]
C0449791
UMLS CUI [1,2]
C0574845
d. Did the patient receive treatment for clinical event?
Beschreibung

therapy

Datentyp

text

Alias
UMLS CUI [1]
C0087111
i. If Yes, indicate treatment (mention all that apply: Steroids/ Plasmapheresis/ IVig ):
Beschreibung

steroids; plasmapheresis; IVig

Datentyp

text

Alias
UMLS CUI [1]
C0025815
UMLS CUI [2]
C0032134
UMLS CUI [3]
C1293891
UMLS CUI [4]
C0398341
e. Was the patient fully recovered from this relapse within a year?
Beschreibung

disease recovery

Datentyp

text

Alias
UMLS CUI [1]
C2004454
f. Month/Year of first symptoms:
Beschreibung

year symptom first

Datentyp

partialDate

Alias
UMLS CUI [1]
C0574845
g. Initial symptoms: i. Vision:
Beschreibung

Initial symptoms vision

Datentyp

text

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0205435
UMLS CUI [1,3]
C0042789
1. If Yes, specify (mention all that apply: Bilateral/ Right/ Left/ Unknown):
Beschreibung

Initial symptoms vision site

Datentyp

text

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0205435
UMLS CUI [1,3]
C0042789
UMLS CUI [1,4]
C0205145
ii. Motor:
Beschreibung

Initial symptoms motor

Datentyp

text

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0205435
UMLS CUI [1,3]
C0026612
1. If Yes, specify (mention all that apply: Bilateral/ Right/ Left/ Unknown):
Beschreibung

Initial symptoms motor site

Datentyp

text

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0205435
UMLS CUI [1,3]
C0026612
UMLS CUI [1,4]
C0205145
iii. Sensory:
Beschreibung

Initial symptoms Sensory

Datentyp

text

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0205435
UMLS CUI [1,3]
C0445254
1. If Yes, specify (mention all that apply: Bilateral/ Right/ Left/ Unknown):
Beschreibung

Initial symptoms Sensory site

Datentyp

text

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0205435
UMLS CUI [1,3]
C0445254
UMLS CUI [1,4]
C0205145
iv. Coordination:
Beschreibung

Initial symptoms Coordination

Datentyp

text

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0205435
UMLS CUI [1,3]
C0242414
1. If Yes, specify (mention all that apply: Bilateral/ Right/ Left/ Unknown):
Beschreibung

Initial symptoms Coordination site

Datentyp

text

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0205435
UMLS CUI [1,3]
C0242414
UMLS CUI [1,4]
C0205145
v. Bowel/Bladder:
Beschreibung

Initial symptoms Bowel bladder

Datentyp

text

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0205435
UMLS CUI [1,3]
C0021853
UMLS CUI [1,4]
C0005682
vi. Fatigue:
Beschreibung

Initial symptoms Fatigue

Datentyp

text

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0205435
UMLS CUI [1,3]
C0015672
vii. Cognitive:
Beschreibung

Initial symptoms Cognitive

Datentyp

text

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0205435
UMLS CUI [1,3]
C1516691
viii. Encephalopathy:
Beschreibung

Initial symptoms Encephalopathy

Datentyp

text

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0205435
UMLS CUI [1,3]
C0085584
ix. Other, specify:
Beschreibung

Initial symptoms Other

Datentyp

text

Alias
UMLS CUI [1,1]
C1457887
UMLS CUI [1,2]
C0205435
UMLS CUI [1,3]
C0205394
h. Localization of clinical event: i. Optic nerve:
Beschreibung

disease site optic nerve

Datentyp

text

Alias
UMLS CUI [1,1]
C1290853
UMLS CUI [1,2]
C0029130
1. If Yes, specify observation method (mention all that apply: Exam/ MRI/ History/ Unknown):
Beschreibung

disease site optic nerve diagnostic procedure

Datentyp

text

Alias
UMLS CUI [1,1]
C1290853
UMLS CUI [1,2]
C0029130
UMLS CUI [1,3]
C0430022
ii. Cerebrum:
Beschreibung

disease site Cerebrum

Datentyp

text

Alias
UMLS CUI [1,1]
C1290853
UMLS CUI [1,2]
C0242202
1. If Yes, specify observation method (mention all that apply: Exam/ MRI/ History/ Unknown):
Beschreibung

disease site Cerebrum diagnostic procedure

Datentyp

text

Alias
UMLS CUI [1,1]
C1290853
UMLS CUI [1,2]
C0242202
UMLS CUI [1,3]
C0430022
iii. Brainstem/Cerebellar:
Beschreibung

disease site Cerebellar

Datentyp

text

Alias
UMLS CUI [1,1]
C1290853
UMLS CUI [1,2]
C0007765
1. If Yes, specify observation method (mention all that apply: Exam/ MRI/ History/ Unknown):
Beschreibung

disease site Cerebellar diagnostic procedure

Datentyp

text

Alias
UMLS CUI [1,1]
C1290853
UMLS CUI [1,2]
C0007765
UMLS CUI [1,3]
C0430022
iv. Spinal cord:
Beschreibung

disease site Spinal cord

Datentyp

text

Alias
UMLS CUI [1,1]
C1290853
UMLS CUI [1,2]
C0037925
1. If Yes, specify observation method (mention all that apply: Exam/ MRI/ History/ Unknown):
Beschreibung

disease site Spinal cord diagnostic procedure

Datentyp

text

Alias
UMLS CUI [1,1]
C1290853
UMLS CUI [1,2]
C0037925
UMLS CUI [1,3]
C0430022
8. Do you have a family history of MS?
Beschreibung

family history multiple sclerosis

Datentyp

text

Alias
UMLS CUI [1,1]
C0241889
UMLS CUI [1,2]
C0026769
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Ähnliche Modelle

Diagnosis and Disease Characteristics

1 Formulare
Name
Typ
Description | Question | Decode (Coded Value)
Datentyp
Alias
Item Group
Diagnosis and Disease Characteristics
C0011900 (UMLS CUI-1)
C0599878 (UMLS CUI-3)
Study ID
Item
Study ID
integer
C2826693 (UMLS CUI [1])
Study site name
Item
Study site name
text
C2825164 (UMLS CUI [1])
Subject ID
Item
Subject ID
integer
C2348585 (UMLS CUI [1])
Item
1. What is the current diagnosis? (choose only one)
text
C0011900 (UMLS CUI [1])
current diagnosis
Code List
1. What is the current diagnosis? (choose only one)
CL Item
RIS (Radiologically Isolated Syndrome)  (RIS)
C3846158 (UMLS CUI-1)
(Comment:en)
CL Item
MS (Multiple Sclerosis) (Go to question 2 to specify clinical course, then skip to question 6)  (MS)
C0026769 (UMLS CUI-1)
(Comment:en)
CL Item
NMO (Neuromyelitis Optica) spectrum disorder (Go to question 3 to specify clinical course, then skip to question 7) (NMO)
C0027873 (UMLS CUI-1)
(Comment:en)
CL Item
ADEM (Acute Disseminated Encephalomyelitis) (Go to question 4 to specify clinical course, then skip to question 7) (ADEM)
C0014059 (UMLS CUI-1)
(Comment:en)
CL Item
Other CNS demyelinating disorder (Go to question 5 to specify clinical course, then skip to question 7) (Other)
C0205394 (UMLS CUI-1)
C0011302 (UMLS CUI-2)
(Comment:en)
clinical exam of symptoms; MRI
Item
b. Improvement by clinical exam, MRI or both after acute event
boolean
C1456356 (UMLS CUI [1,1])
C1457887 (UMLS CUI [1,2])
C0024485 (UMLS CUI [2])
Multifocal white matter lesions
Item
b. Multifocal lesions predominantly involving white matter
boolean
C2751845 (UMLS CUI [1])
ADEM
Item
b. New event of ADEM, 3 or more months with recurrence of the initial symptoms and signs (recurrent ADEM)
boolean
C0014059 (UMLS CUI [1])
ADEM
Item
b. ADEM followed by a new clinical event also meeting criteria for ADEM, but involving anatomic areas of the CNS
boolean
C0014059 (UMLS CUI [1])
Clinical course CNS demyelinating disorder
Item
5. Clinical course – Other CNS demyelinating disorder: a. Specify disorder:
text
C0449259 (UMLS CUI [1,1])
C0011302 (UMLS CUI [1,2])
Item
b. Type:
text
C1114762 (UMLS CUI [1,1])
C0449259 (UMLS CUI [1,2])
C0011302 (UMLS CUI [1,3])
types of diseases
Code List
b. Type:
CL Item
Monophasic  (1)
CL Item
Recurrent  (2)
CL Item
Unknown (3)
CL Item
Other (4)
Other
Item
Other, specify:
text
C0205394 (UMLS CUI [1])
Item Group
2. Clinical Course - MS
C0449259 (UMLS CUI-1)
C0026769 (UMLS CUI-2)
Item
a. Onset Course:
text
C0449259 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
C0277793 (UMLS CUI [1,3])
Clinical course MS
Code List
a. Onset Course:
CL Item
Relapsing  (1)
C0751967 (UMLS CUI-1)
(Comment:en)
CL Item
Progressive (2)
C0751964 (UMLS CUI-1)
(Comment:en)
Item
b. Current Disease Course:
text
C0449259 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
Disease Course Multiple Sclerosis, Relapsing-Remitting
Code List
b. Current Disease Course:
CL Item
Relapsing remitting (Relapsing remitting)
CL Item
Secondary progressive (Secondary progressive)
CL Item
Progressive relapsing (Progressive relapsing)
CL Item
Primary progressive (Primary progressive)
CL Item
Uncertain (Uncertain)
Item Group
3. Clinical Course - NMO
C0449259 (UMLS CUI-1)
C0027873 (UMLS CUI-2)
Item
a. Type:
text
C0449259 (UMLS CUI [1,1])
C0027873 (UMLS CUI [1,2])
Neuromyelitis Optica
Code List
a. Type:
CL Item
Monophasic (Monophasic)
C4087481 (UMLS CUI-1)
(Comment:en)
CL Item
Relapsing (Relapsing)
C4087551 (UMLS CUI-1)
(Comment:en)
CL Item
Recurrent optic neuritis (Recurrent optic neuritis)
C3266324 (UMLS CUI-1)
(Comment:en)
CL Item
Recurrent myelitis (Recurrent myelitis)
C0026975 (UMLS CUI-1)
C2945760 (UMLS CUI-2)
(Comment:en)
CL Item
Unknown (Unknown)
C0449259 (UMLS CUI-1)
C0439673 (UMLS CUI-2)
C0027873 (UMLS CUI-3)
(Comment:en)
CL Item
Other (Other)
C0449259 (UMLS CUI-1)
C0205394 (UMLS CUI-2)
C0027873 (UMLS CUI-3)
(Comment:en)
Item
i. Optic neuritis, specify laterality:
text
C0029134 (UMLS CUI [1,1])
C0925205 (UMLS CUI [1,2])
Optic neuritis
Code List
i. Optic neuritis, specify laterality:
CL Item
Right (Right)
CL Item
Left (Left)
CL Item
Bilateral (Bilateral)
CL Item
Unknown (Unknown)
Acute myelitis
Item
ii. Acute myelitis, specify involvement of which segments (Cervical)
boolean
C0270626 (UMLS CUI [1,1])
C0270627 (UMLS CUI [1,2])
C0205064 (UMLS CUI [1,3])
Acute myelitis
Item
ii. Acute myelitis, specify involvement of which segments (Thoracic )
boolean
C0270626 (UMLS CUI [1,1])
C0270627 (UMLS CUI [1,2])
C0817096 (UMLS CUI [1,3])
Acute myelitis
Item
ii. Acute myelitis, specify involvement of which segments (Lumbar )
boolean
C0270626 (UMLS CUI [1,1])
C0270627 (UMLS CUI [1,2])
C0024090 (UMLS CUI [1,3])
Item
iii.
text
C0241224 (UMLS CUI [1,1])
C0024485 (UMLS CUI [1,2])
C0003241 (UMLS CUI [2,1])
C3266851 (UMLS CUI [2,2])
C0027873 (UMLS CUI [3])
spinal cord lesion MRI
Code List
iii.
CL Item
Brain MRI not meeting diagnostic criteria for MS (Brain MRI not meeting diagnostic criteria for MS)
C0024485 (UMLS CUI-1)
C0332196 (UMLS CUI-2)
C0026769 (UMLS CUI-3)
(Comment:en)
CL Item
NMO-IgG seropositive (NMO-IgG seropositive)
C2919772 (UMLS CUI-1)
C0521143 (UMLS CUI-2)
(Comment:en)
CL Item
NMO-IgG seronegative (NMO-IgG seronegative)
C2919772 (UMLS CUI-1)
C0521144 (UMLS CUI-2)
(Comment:en)
CL Item
NMO-IgG sero status unknown (NMO-IgG sero status unknown)
C2919772 (UMLS CUI-1)
C0205258 (UMLS CUI-2)
(Comment:en)
CL Item
Contiguous spinal cord lesion on MRI >3 vertebral segments (Contiguous spinal cord lesion on MRI >3 vertebral segments)
C0241224 (UMLS CUI-1)
C0024485 (UMLS CUI-2)
(Comment:en)
onset time optic neuritis myelitis
Item
c. Time between onset of first optic neuritis and first myelitis:
integer
C0449244 (UMLS CUI [1,1])
C0029134 (UMLS CUI [1,2])
C0026975 (UMLS CUI [1,3])
Item Group
4. Clinical Course - ADEM
C0449259 (UMLS CUI-1)
C0014059 (UMLS CUI-2)
Item
a. Type:
text
C0449259 (UMLS CUI [1,1])
C0014059 (UMLS CUI [1,2])
Clinical course ADEM
Code List
a. Type:
CL Item
Monophasic (Monophasic)
C0014059 (UMLS CUI-1)
(Comment:en)
CL Item
Recurrent (Recurrent)
C3266325 (UMLS CUI-1)
(Comment:en)
CL Item
Multiphasic (Multiphasic)
C3495016 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (Unknown)
C0449259 (UMLS CUI-1)
C0439673 (UMLS CUI-2)
(Comment:en)
CL Item
Other (Other)
C0449259 (UMLS CUI-1)
C0205394 (UMLS CUI-2)
(Comment:en)
Other
Item
Other, specify:
text
C0449259 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
encephalopathy
Item
b. Presence of encephalopathy (behavioural change or alteration in consciousness)
boolean
C0085584 (UMLS CUI [1])
Item Group
5. Clinical course – Other CNS demyelinating disorder
C0205394 (UMLS CUI-1)
C0011302 (UMLS CUI-2)
Other
Item
a. Specify disorder:
text
C0205394 (UMLS CUI [1,1])
C0011302 (UMLS CUI [1,2])
Item
b. Type:
text
C0449259 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0011302 (UMLS CUI [1,3])
Clinical course ADEM
Code List
b. Type:
CL Item
Monophasic (Monophasic)
C3846158 (UMLS CUI-1)
C0011302 (UMLS CUI-2)
(Comment:en)
CL Item
Recurrent (Recurrent)
C2945760 (UMLS CUI-1)
C0011302 (UMLS CUI-2)
(Comment:en)
CL Item
Multiphasic (Multiphasic)
C3846158 (UMLS CUI-1)
C0011302 (UMLS CUI-2)
(Comment:en)
CL Item
Unknown (Unknown)
C0449259 (UMLS CUI-1)
C0439673 (UMLS CUI-2)
(Comment:en)
CL Item
Other (Other)
C0449259 (UMLS CUI-1)
C0205394 (UMLS CUI-2)
(Comment:en)
Item Group
6. (For MS patients ONLY) Indicate which diagnostic criteria the patient fulfills: (choose only one)
C0026769 (UMLS CUI-1)
C0679228 (UMLS CUI-2)
Item
RRMS:
text
C0751967 (UMLS CUI [1,1])
C0679228 (UMLS CUI [1,2])
Progressive relapsing multiple sclerosis
Code List
RRMS:
CL Item
≥ 2 attacks; objective clinical evidence of ≥ 2 lesions or objective clinical evidence of 1 lesion with reasonable historical evidence of a prior attack =reasonable historical evidence of a prior attack  (1)
CL Item
≥ 2 attacks; objective clinical evidence of 1 lesion (2)
Item
Dissemination in space, demonstrated by
text
C0026769 (UMLS CUI [1,1])
C0205221 (UMLS CUI [1,2])
C1515974 (UMLS CUI [1,3])
Dissemination in space
Code List
Dissemination in space, demonstrated by
CL Item
≥ 1 T2 lesion in at least 2 of 4 MS-typical regions of the CNS (periventricular, juxtacortical, infratentorial,  (1)
CL Item
or spinal cord) (or spinal cord))
CL Item
1 attack; objective clinical evidence of ≥ 2 lesions (2)
Item
Dissemination in time, demonstrated by:
text
C0026769 (UMLS CUI [1,1])
C0205221 (UMLS CUI [1,2])
C0040223 (UMLS CUI [1,3])
Dissemination in time
Code List
Dissemination in time, demonstrated by:
CL Item
Simultaneous presence of asymptomatic gadolinium-enhancing and nonenhancing lesions at any time (1)
CL Item
A new T2 and/or gadolinium-enhancing lesion(s) on follow-up MRI, irrespective of its timing with  (2)
CL Item
reference to a baseline scan (reference to a baseline scan)
CL Item
1 attack; objective clinical evidence of 1 lesion (clinically isolated syndrome) (3)
Item
Dissemination in space and time, demonstrated by: For DIS: ≥ 1 T2 lesion in at least 2 of 4 MS-typical regions of the CNS (periventricular, juxtacortical, infratentorial, or spinal cord); and For DIT:
text
C0026769 (UMLS CUI [1,1])
C0205221 (UMLS CUI [1,2])
C0040223 (UMLS CUI [1,3])
C1515974 (UMLS CUI [1,4])
Dissemination in space and time
Code List
Dissemination in space and time, demonstrated by: For DIS: ≥ 1 T2 lesion in at least 2 of 4 MS-typical regions of the CNS (periventricular, juxtacortical, infratentorial, or spinal cord); and For DIT:
CL Item
Simultaneous presence of asymptomatic gadolinium-enhancing and nonenhancing lesions at any time (1)
CL Item
A new T2 and/or gadolinium-enhancing lesion(s) on follow-up MRI, irrespective of its timing with  (2)
CL Item
reference to a baseline scan (reference to a baseline scan)
Multiple Sclerosis, Primary Progressive
Item
PPMS: 1 year of disease progression (retrospectively or prospectively determined) plus 2 of 3 of the following: Evidence for DIS in the brain based on ≥ 1 T2 lesions in the MS-characteristic (periventricular, juxtacortical, or infratentorial) regions Evidence for DIS in the spinal cord based on ≥ 2 T2 lesions in the cord Positive CSF (isoelectric focusing evidence of oligoclonal bands and/or elevated IgG index)
boolean
C0751964 (UMLS CUI [1,1])
C0679228 (UMLS CUI [1,2])
Multiple Sclerosis, Secondary Progressive
Item
SPMS: Initial RR disease course followed by progression with or without occasional relapses, minor remissions, and plateaus
boolean
C0751965 (UMLS CUI [1,1])
C0679228 (UMLS CUI [1,2])
Multiple Sclerosis, Progressive Relapsing
Item
PRMS: Progressive disease from onset, with clear acute relapses, with or without full recovery; periods between relapses characterized by continuing progression
boolean
C0393666 (UMLS CUI [1,1])
C0679228 (UMLS CUI [1,2])
Item Group
7. Onset History
C0262926 (UMLS CUI-1)
C0277793 (UMLS CUI-2)
year of diagnosis
Item
a. Year of first diagnosis:
partialDate
C2316983 (UMLS CUI [1])
Item
b. Did occurrence of onset clinical event occur:
text
C0574845 (UMLS CUI [1])
disease onset
Code List
b. Did occurrence of onset clinical event occur:
CL Item
Within 1 month post-infection? (Within 1 month post-infection?)
CL Item
Within 1 month post-vaccination? (Within 1 month post-vaccination?)
CL Item
Neither (Neither)
Item
c. Indicate first onset was (choose only one):
text
C0449791 (UMLS CUI [1,1])
C0574845 (UMLS CUI [1,2])
disease onset first unifocal lesion multifocal lesion
Code List
c. Indicate first onset was (choose only one):
CL Item
Unifocal  (1)
CL Item
Multifocal (2)
Item
d. Did the patient receive treatment for clinical event?
text
C0087111 (UMLS CUI [1])
therapy
Code List
d. Did the patient receive treatment for clinical event?
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
steroids; plasmapheresis; IVig
Item
i. If Yes, indicate treatment (mention all that apply: Steroids/ Plasmapheresis/ IVig ):
text
C0025815 (UMLS CUI [1])
C0032134 (UMLS CUI [2])
C1293891 (UMLS CUI [3])
C0398341 (UMLS CUI [4])
Item
e. Was the patient fully recovered from this relapse within a year?
text
C2004454 (UMLS CUI [1])
disease recovery
Code List
e. Was the patient fully recovered from this relapse within a year?
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
year symptom first
Item
f. Month/Year of first symptoms:
partialDate
C0574845 (UMLS CUI [1])
Item
g. Initial symptoms: i. Vision:
text
C1457887 (UMLS CUI [1,1])
C0205435 (UMLS CUI [1,2])
C0042789 (UMLS CUI [1,3])
disease recovery
Code List
g. Initial symptoms: i. Vision:
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
Initial symptoms vision site
Item
1. If Yes, specify (mention all that apply: Bilateral/ Right/ Left/ Unknown):
text
C1457887 (UMLS CUI [1,1])
C0205435 (UMLS CUI [1,2])
C0042789 (UMLS CUI [1,3])
C0205145 (UMLS CUI [1,4])
Item
ii. Motor:
text
C1457887 (UMLS CUI [1,1])
C0205435 (UMLS CUI [1,2])
C0026612 (UMLS CUI [1,3])
disease recovery
Code List
ii. Motor:
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
Initial symptoms motor site
Item
1. If Yes, specify (mention all that apply: Bilateral/ Right/ Left/ Unknown):
text
C1457887 (UMLS CUI [1,1])
C0205435 (UMLS CUI [1,2])
C0026612 (UMLS CUI [1,3])
C0205145 (UMLS CUI [1,4])
Item
iii. Sensory:
text
C1457887 (UMLS CUI [1,1])
C0205435 (UMLS CUI [1,2])
C0445254 (UMLS CUI [1,3])
disease recovery
Code List
iii. Sensory:
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
Initial symptoms Sensory site
Item
1. If Yes, specify (mention all that apply: Bilateral/ Right/ Left/ Unknown):
text
C1457887 (UMLS CUI [1,1])
C0205435 (UMLS CUI [1,2])
C0445254 (UMLS CUI [1,3])
C0205145 (UMLS CUI [1,4])
Item
iv. Coordination:
text
C1457887 (UMLS CUI [1,1])
C0205435 (UMLS CUI [1,2])
C0242414 (UMLS CUI [1,3])
therapy
Code List
iv. Coordination:
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
Initial symptoms Coordination site
Item
1. If Yes, specify (mention all that apply: Bilateral/ Right/ Left/ Unknown):
text
C1457887 (UMLS CUI [1,1])
C0205435 (UMLS CUI [1,2])
C0242414 (UMLS CUI [1,3])
C0205145 (UMLS CUI [1,4])
Item
v. Bowel/Bladder:
text
C1457887 (UMLS CUI [1,1])
C0205435 (UMLS CUI [1,2])
C0021853 (UMLS CUI [1,3])
C0005682 (UMLS CUI [1,4])
therapy
Code List
v. Bowel/Bladder:
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
Item
vi. Fatigue:
text
C1457887 (UMLS CUI [1,1])
C0205435 (UMLS CUI [1,2])
C0015672 (UMLS CUI [1,3])
therapy
Code List
vi. Fatigue:
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
Item
vii. Cognitive:
text
C1457887 (UMLS CUI [1,1])
C0205435 (UMLS CUI [1,2])
C1516691 (UMLS CUI [1,3])
therapy
Code List
vii. Cognitive:
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
Item
viii. Encephalopathy:
text
C1457887 (UMLS CUI [1,1])
C0205435 (UMLS CUI [1,2])
C0085584 (UMLS CUI [1,3])
therapy
Code List
viii. Encephalopathy:
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
Item
ix. Other, specify:
text
C1457887 (UMLS CUI [1,1])
C0205435 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,3])
therapy
Code List
ix. Other, specify:
Item
h. Localization of clinical event: i. Optic nerve:
text
C1290853 (UMLS CUI [1,1])
C0029130 (UMLS CUI [1,2])
therapy
Code List
h. Localization of clinical event: i. Optic nerve:
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
disease site optic nerve diagnostic procedure
Item
1. If Yes, specify observation method (mention all that apply: Exam/ MRI/ History/ Unknown):
text
C1290853 (UMLS CUI [1,1])
C0029130 (UMLS CUI [1,2])
C0430022 (UMLS CUI [1,3])
Item
ii. Cerebrum:
text
C1290853 (UMLS CUI [1,1])
C0242202 (UMLS CUI [1,2])
therapy
Code List
ii. Cerebrum:
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
disease site Cerebrum diagnostic procedure
Item
1. If Yes, specify observation method (mention all that apply: Exam/ MRI/ History/ Unknown):
text
C1290853 (UMLS CUI [1,1])
C0242202 (UMLS CUI [1,2])
C0430022 (UMLS CUI [1,3])
Item
iii. Brainstem/Cerebellar:
text
C1290853 (UMLS CUI [1,1])
C0007765 (UMLS CUI [1,2])
therapy
Code List
iii. Brainstem/Cerebellar:
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
disease site Cerebellar diagnostic procedure
Item
1. If Yes, specify observation method (mention all that apply: Exam/ MRI/ History/ Unknown):
text
C1290853 (UMLS CUI [1,1])
C0007765 (UMLS CUI [1,2])
C0430022 (UMLS CUI [1,3])
Item
iv. Spinal cord:
text
C1290853 (UMLS CUI [1,1])
C0037925 (UMLS CUI [1,2])
therapy
Code List
iv. Spinal cord:
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
disease site Spinal cord diagnostic procedure
Item
1. If Yes, specify observation method (mention all that apply: Exam/ MRI/ History/ Unknown):
text
C1290853 (UMLS CUI [1,1])
C0037925 (UMLS CUI [1,2])
C0430022 (UMLS CUI [1,3])
Item
8. Do you have a family history of MS?
text
C0241889 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
therapy
Code List
8. Do you have a family history of MS?
CL Item
Yes  (1)
CL Item
No  (2)
CL Item
Unknown (3)
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