ID

29133

Beschrijving

MS Common Data Elements, Multiple Sclerosis Diagnosis and Disease Characteristics for semantic analysis 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/

Trefwoorden

Versies (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
Houder van rechten

NINDS Common Data Elements

Geüploaded op

27 februari 2018

DOI

10.21961/mdm:29133

Een <abbr title="Digital Object Identifier">DOI</abbr> werd reeds aangevraagd.

Licentie

Creative Commons BY-NC 3.0
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    MS CDE Diagnosis and Disease Characteristics Multiple Sclerosis

    Engels

    Diagnosis and Disease Characteristics

    1 Formulieren  
    Diagnosis and Disease Characteristics
    Beschrijving

    Diagnosis and Disease Characteristics

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

    Study ID

    Datatype

    integer

    Alias
    UMLS CUI [1]
    C2826693
    Study site name
    Beschrijving

    Study site name

    Datatype

    text

    Alias
    UMLS CUI [1]
    C2825164
    Subject ID
    Beschrijving

    Subject ID

    Datatype

    integer

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

    current diagnosis

    Datatype

    text

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

    clinical exam of symptoms; MRI

    Datatype

    boolean

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

    Multifocal white matter lesions

    Datatype

    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)
    Beschrijving

    ADEM

    Datatype

    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
    Beschrijving

    ADEM

    Datatype

    boolean

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

    Clinical course CNS demyelinating disorder

    Datatype

    text

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

    types Clinical course CNS demyelinating disorder

    Datatype

    text

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

    Other

    Datatype

    text

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

    2. Clinical Course - MS

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

    Clinical course MS

    Datatype

    text

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

    Clinical course MS current

    Datatype

    text

    Alias
    UMLS CUI [1,1]
    C0449259
    UMLS CUI [1,2]
    C0026769
    UMLS CUI [2,1]
    C0205394
    UMLS CUI [2,2]
    C0449259
    UMLS CUI [2,3]
    C0026769
    3. Clinical Course - NMO
    Beschrijving

    3. Clinical Course - NMO

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

    Clinical course Neuromyelitis Optica

    Datatype

    text

    Alias
    UMLS CUI [1,1]
    C0449259
    UMLS CUI [1,2]
    C0027873
    UMLS CUI [2,1]
    C0027873
    UMLS CUI [2,2]
    C0205394
    UMLS CUI [2,3]
    C0449259
    i. Optic neuritis, specify laterality:
    Beschrijving

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

    Datatype

    text

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

    Acute myelitis

    Datatype

    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 )
    Beschrijving

    Acute myelitis

    Datatype

    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 )
    Beschrijving

    Acute myelitis

    Datatype

    boolean

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

    diagnostic criteria NMO

    Datatype

    text

    Alias
    UMLS CUI [1,1]
    C0241224
    UMLS CUI [1,2]
    C0024485
    UMLS CUI [3]
    C0027873
    UMLS CUI [4]
    C2919772
    c. Time between onset of first optic neuritis and first myelitis:
    Beschrijving

    onset time optic neuritis myelitis

    Datatype

    integer

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

    4. Clinical Course - ADEM

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

    Clinical course ADEM

    Datatype

    text

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

    Other

    Datatype

    text

    Alias
    UMLS CUI [1,1]
    C0449259
    UMLS CUI [1,2]
    C0014059
    UMLS CUI [1,3]
    C0205394
    b. Presence of encephalopathy (behavioural change or alteration in consciousness)
    Beschrijving

    encephalopathy

    Datatype

    boolean

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

    5. Clinical course – Other CNS demyelinating disorder

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

    Other

    Datatype

    text

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

    Clinical course ADEM

    Datatype

    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)
    Beschrijving

    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:
    Beschrijving

    Relapsing remitting multiple sclerosis

    Datatype

    text

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

    Dissemination in space

    Datatype

    text

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

    Dissemination in time

    Datatype

    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:
    Beschrijving

    Dissemination in space and time

    Datatype

    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)
    Beschrijving

    Multiple Sclerosis, Primary Progressive

    Datatype

    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
    Beschrijving

    Multiple Sclerosis, Secondary Progressive

    Datatype

    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
    Beschrijving

    Multiple Sclerosis, Progressive Relapsing

    Datatype

    boolean

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

    7. Onset History

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

    year of diagnosis

    Datatype

    partialDate

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

    disease onset

    Datatype

    text

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

    disease onset first unifocal lesion multifocal lesion

    Datatype

    text

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

    therapy

    Datatype

    text

    Alias
    UMLS CUI [1]
    C2114510
    UMLS CUI [2,1]
    C2114510
    UMLS CUI [2,2]
    C0205394
    UMLS CUI [3]
    C2827774
    UMLS CUI [4,1]
    C2827774
    UMLS CUI [4,2]
    C0205394
    UMLS CUI [5]
    C0679868
    UMLS CUI [6,1]
    C0679868
    UMLS CUI [6,2]
    C0205394
    i. If Yes, indicate treatment (mention all that apply: Steroids/ Plasmapheresis/ IVig ):
    Beschrijving

    steroids; plasmapheresis; IVig

    Datatype

    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?
    Beschrijving

    disease recovery

    Datatype

    text

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

    year symptom first

    Datatype

    partialDate

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

    Initial symptoms vision

    Datatype

    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):
    Beschrijving

    Initial symptoms vision site

    Datatype

    text

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

    Initial symptoms motor

    Datatype

    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):
    Beschrijving

    Initial symptoms motor site

    Datatype

    text

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

    Initial symptoms Sensory

    Datatype

    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):
    Beschrijving

    Initial symptoms Sensory site

    Datatype

    text

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

    Initial symptoms Coordination

    Datatype

    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):
    Beschrijving

    Initial symptoms Coordination site

    Datatype

    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:
    Beschrijving

    Initial symptoms Bowel bladder

    Datatype

    text

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

    Initial symptoms Fatigue

    Datatype

    text

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

    Initial symptoms Cognitive

    Datatype

    text

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

    Initial symptoms Encephalopathy

    Datatype

    text

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

    Initial symptoms Other

    Datatype

    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:
    Beschrijving

    disease site optic nerve

    Datatype

    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):
    Beschrijving

    disease site optic nerve diagnostic procedure

    Datatype

    text

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

    disease site Cerebrum

    Datatype

    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):
    Beschrijving

    disease site Cerebrum diagnostic procedure

    Datatype

    text

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

    disease site Cerebellar

    Datatype

    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):
    Beschrijving

    disease site Cerebellar diagnostic procedure

    Datatype

    text

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

    disease site Spinal cord

    Datatype

    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):
    Beschrijving

    disease site Spinal cord diagnostic procedure

    Datatype

    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?
    Beschrijving

    family history multiple sclerosis

    Datatype

    text

    Alias
    UMLS CUI [1,1]
    C0241889
    UMLS CUI [1,2]
    C0026769
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    Similar models

    Diagnosis and Disease Characteristics

    1 Formulieren
    Name
    Type
    Description | Question | Decode (Coded Value)
    Datatype
    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])
    C0205394 (UMLS CUI [2,1])
    C0449259 (UMLS CUI [2,2])
    C0026769 (UMLS CUI [2,3])
    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])
    C0027873 (UMLS CUI [2,1])
    C0205394 (UMLS CUI [2,2])
    C0449259 (UMLS CUI [2,3])
    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])
    C0027873 (UMLS CUI [3])
    C2919772 (UMLS CUI [4])
    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])
    C0014059 (UMLS CUI [1,2])
    C0205394 (UMLS CUI [1,3])
    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
    C2114510 (UMLS CUI [1])
    C2114510 (UMLS CUI [2,1])
    C0205394 (UMLS CUI [2,2])
    C2827774 (UMLS CUI [3])
    C2827774 (UMLS CUI [4,1])
    C0205394 (UMLS CUI [4,2])
    C0679868 (UMLS CUI [5])
    C0679868 (UMLS CUI [6,1])
    C0205394 (UMLS CUI [6,2])
    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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