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16680
Description
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/
Keywords
Versions (4)
- 7/31/16 7/31/16 -
- 12/20/17 12/20/17 -
- 2/27/18 2/27/18 -
- 6/20/18 6/20/18 - Julian Varghese
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July 31, 2016
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Creative Commons BY-NC 3.0
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NINDS CDE Diagnosis and Disease Characteristics Multiple Sclerosis
Diagnosis and Disease Characteristics
- StudyEvent: ODM
Similar models
Diagnosis and Disease Characteristics
- StudyEvent: ODM
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Diagnosis and Disease Characteristics
C0011900 (UMLS CUI-1)
C0599878 (UMLS CUI-3)
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])
CL Item
RIS (Radiologically Isolated Syndrome) (1)
CL Item
RIS (Radiologically Isolated Syndrome) (2)
CL Item
MS (Multiple Sclerosis) (Go to question 2 to specify clinical course, then skip to question 6) (3)
CL Item
NMO (Neuromyelitis Optica) spectrum disorder (Go to question 3 to specify clinical course, then skip to (4)
CL Item
question 7) (question 7))
CL Item
ADEM (Acute Disseminated Encephalomyelitis) (Go to question 4 to specify clinical course, then skip to (5)
CL Item
question 7) (question 7) )
CL Item
Other CNS demyelinating disorder (Go to question 5 to specify clinical course, then skip to question 7) (6)
Item
2. Clinical course – MS. a. Onset Course:
text
C0449259 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,2])
CL Item
Relapsing (1)
CL Item
Progressive (2)
Item
b. Current Disease Course:
text
C0242656 (UMLS CUI [1,1])
C0751967 (UMLS CUI [1,2])
C0751967 (UMLS CUI [1,2])
CL Item
Relapsing remitting (1)
CL Item
Secondary progressive (2)
CL Item
Progressive relapsing (3)
CL Item
Primary progressive (4)
CL Item
Uncertain (5)
Item
3. Clinical course – NMO Spectrum Disorder: a. Type:
text
C0449259 (UMLS CUI [1,1])
C0027873 (UMLS CUI [1,2])
C0027873 (UMLS CUI [1,2])
CL Item
Monophasic (1)
CL Item
Relapsing (2)
CL Item
Recurrent optic neuritis (3)
CL Item
Recurrent myelitis (4)
CL Item
Unknown (5)
CL Item
Other (6)
Other
Item
Other, specify:
text
C0205394 (UMLS CUI [1])
CL Item
Right (1)
CL Item
Left (2)
CL Item
Bilateral (3)
CL Item
Unknown (4)
Acute myelitis
Item
ii. Acute myelitis, specify involvement of which segments (Cervical)
boolean
C0270626 (UMLS CUI [1,1])
C0270627 (UMLS CUI [1,2])
C0270627 (UMLS CUI [1,2])
Acute myelitis
Item
ii. Acute myelitis, specify involvement of which segments (Thoracic )
boolean
C0270626 (UMLS CUI [1,1])
C0270627 (UMLS CUI [1,2])
C0270627 (UMLS CUI [1,2])
Acute myelitis
Item
ii. Acute myelitis, specify involvement of which segments (Lumbar )
boolean
C0270626 (UMLS CUI [1,1])
C0270627 (UMLS CUI [1,2])
C0270627 (UMLS CUI [1,2])
Item
iii. Contiguous spinal cord lesion on MRI >3 vertebral segments
text
C0241224 (UMLS CUI [1,1])
C0024485 (UMLS CUI [1,2])
C0024485 (UMLS CUI [1,2])
CL Item
Brain MRI not meeting diagnostic criteria for MS (1)
CL Item
NMO-IgG seropositive (2)
CL Item
NMO-IgG seronegative (3)
CL Item
NMO-IgG sero status unknown (4)
optic neuritis; myelitis
Item
c. Time between onset of first optic neuritis and first myelitis: (please specify) months
integer
C0029134 (UMLS CUI [1])
C0026975 (UMLS CUI [2])
C0026975 (UMLS CUI [2])
Item
4. Clinical course – ADEM: a. Type:
text
C0449259 (UMLS CUI [1,1])
C0014059 (UMLS CUI [1,2])
C0014059 (UMLS CUI [1,2])
CL Item
Monophasic (1)
CL Item
Recurrent (2)
CL Item
Multiphasic (3)
CL Item
Unknown (4)
CL Item
Other (5)
Other
Item
Other, specify:
text
C0205394 (UMLS CUI [1])
encephalopathy
Item
b. Presence of encephalopathy (behavioural change or alteration in consciousness)
boolean
C0085584 (UMLS CUI [1])
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])
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])
C0011302 (UMLS CUI [1,2])
Item
b. Type:
text
C1114762 (UMLS CUI [1,1])
C0449259 (UMLS CUI [1,2])
C0011302 (UMLS CUI [1,3])
C0449259 (UMLS CUI [1,2])
C0011302 (UMLS CUI [1,3])
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
6. (For MS patients ONLY) Indicate which diagnostic criteria the patient fulfills: (choose only one) RRMS:
text
C0751967 (UMLS CUI [1])
Code List
6. (For MS patients ONLY) Indicate which diagnostic criteria the patient fulfills: (choose only one) 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)
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)
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
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])
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])
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])
Item Group
7. Onset History
C0262926 (UMLS CUI-1)
C0277793 (UMLS CUI-2)
C0277793 (UMLS CUI-2)
year of diagnosis
Item
a. Year of first diagnosis:
partialDate
C0439234 (UMLS CUI [1,1])
C0011900 (UMLS CUI [1,2])
C0011900 (UMLS CUI [1,2])
CL Item
Within 1 month post-infection? (1)
CL Item
Within 1 month post-vaccination? (2)
CL Item
Neither (3)
Item
c. Indicate first onset was (choose only one):
text
C0277793 (UMLS CUI [1,1])
C0205435 (UMLS CUI [1,2])
C1710544 (UMLS CUI [1,3])
C1334819 (UMLS CUI [1,4])
C0205435 (UMLS CUI [1,2])
C1710544 (UMLS CUI [1,3])
C1334819 (UMLS CUI [1,4])
Code List
c. Indicate first onset was (choose only one):
CL Item
Unifocal (1)
CL Item
Multifocal (2)
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
C0038317 (UMLS CUI [1])
C0032134 (UMLS CUI [2])
C1293891 (UMLS CUI [3])
C0032134 (UMLS CUI [2])
C1293891 (UMLS CUI [3])
Item
e. Was the patient fully recovered from this relapse within a year?
text
C2004454 (UMLS CUI [1])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)
year symptom first
Item
f. onth/Year of first symptoms:
partialDate
C0439234 (UMLS CUI [1,1])
C1457887 (UMLS CUI [1,2])
C0205435 (UMLS CUI [1,3])
C1457887 (UMLS CUI [1,2])
C0205435 (UMLS CUI [1,3])
Item
g. Initial symptoms: i. Vision:
text
C1457887 (UMLS CUI [1,1])
C0205435 (UMLS CUI [1,2])
C0042789 (UMLS CUI [1,3])
C0205435 (UMLS CUI [1,2])
C0042789 (UMLS CUI [1,3])
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])
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])
C0205435 (UMLS CUI [1,2])
C0026612 (UMLS CUI [1,3])
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])
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])
C0205435 (UMLS CUI [1,2])
C0445254 (UMLS CUI [1,3])
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])
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])
C0205435 (UMLS CUI [1,2])
C0242414 (UMLS CUI [1,3])
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])
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])
C0205435 (UMLS CUI [1,2])
C0021853 (UMLS CUI [1,3])
C0005682 (UMLS CUI [1,4])
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])
C0205435 (UMLS CUI [1,2])
C0015672 (UMLS CUI [1,3])
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])
C0205435 (UMLS CUI [1,2])
C1516691 (UMLS CUI [1,3])
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])
C0205435 (UMLS CUI [1,2])
C0085584 (UMLS CUI [1,3])
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])
C0205435 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,3])
Item
h. Localization of clinical event: i. Optic nerve:
text
C1290853 (UMLS CUI [1,1])
C0029130 (UMLS CUI [1,2])
C0029130 (UMLS CUI [1,2])
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])
C0029130 (UMLS CUI [1,2])
C0430022 (UMLS CUI [1,3])
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])
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])
C0007765 (UMLS CUI [1,2])
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])
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])
C0037925 (UMLS CUI [1,2])
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])
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])
C0026769 (UMLS CUI [1,2])
CL Item
Yes (1)
CL Item
No (2)
CL Item
Unknown (3)