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19628
Description
Inflammatory demyelinating diseases CNS Core Data Set with the adaption of item requests of UK Essen.
Keywords
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January 17, 2017
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Creative Commons BY-NC 3.0
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Inflammatory demyelinating diseases CNS Core Data Set
Inflammatory demyelinating diseases CNS Core Data Set
- StudyEvent: ODM
Similar models
Inflammatory demyelinating diseases CNS Core Data Set
- StudyEvent: ODM
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Diagnosis Demyelinating disease of central nervous system
C0011900 (UMLS CUI-1)
C0011302 (UMLS CUI-2)
C0011302 (UMLS CUI-2)
CL Item
Radiologically Isolated Syndrome (RIS) (1)
CL Item
Clinically Isolated Syndrome (CIS) (2)
CL Item
Multiple Sclerosis (MS) (3)
CL Item
Neuromyelitis Optica (NMO) (spectrum disorder) (4)
CL Item
Acute Disseminated Encephalomyelitis (ADEM) (5)
CL Item
Other CNS demyelinating disorder (6)
Other CNS demyelinating disorder
Item
Other CNS demyelinating disorder
text
C0449259 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,2])
Date of Onset
Item
Date of onset
date
C0574845 (UMLS CUI [1])
Date of Diagnosis
Item
Date of diagnosis
date
C2316983 (UMLS CUI [1])
Current flare
Item
Current flare?
boolean
C1517205 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
C0521116 (UMLS CUI [1,2])
CL Item
Methylprednisolone (25)
CL Item
Plasmaseparation (1)
Start Date Current Flare Therapy
Item
Start date of current flare therapy
date
C3173309 (UMLS CUI [1])
End Date Current Flare Therapy
Item
End date of current flare therapy
date
C1531784 (UMLS CUI [1])
Item
Clinical course of multiple sclerosis
integer
C0449259 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,2])
Code List
Clinical course of multiple sclerosis
CL Item
Relapsing-remitting MS (RRMS) (2)
CL Item
Secondary progressive MS (SPMS) (3)
CL Item
Primary progressive MS (PPMS) (4)
CL Item
Others (5)
CL Item
uncertain (-1)
Other clinical course MS
Item
Other clinical course
text
C0449259 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,2])
Item
Clinical course of NMO Spectrum Disorder
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 clinical course NMO
Item
Other clinical course
text
C0449259 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,2])
CL Item
seropositive (seropositive)
CL Item
seronegative (seronegative)
CL Item
not determined (not determined)
Item
anti-MOG (Myelin oligodendrocyte glycoprotein) antibodies
text
C0003241 (UMLS CUI [1,1])
C3266851 (UMLS CUI [1,2])
C3266851 (UMLS CUI [1,2])
Code List
anti-MOG (Myelin oligodendrocyte glycoprotein) antibodies
CL Item
seropositive (seropositive)
CL Item
seronegative (seronegative)
CL Item
not determined (not determined)
Item Group
Acute Disseminated Encephalomyelitis (ADEM)
C0014059 (UMLS CUI-1)
Item
Clinical course of ADEM
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
Unknown (4)
CL Item
Other (5)
Other clinical course ADEM
Item
Other clinical course
text
C0449259 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0205394 (UMLS CUI [1,2])
CL Item
Normal neurologic exam (all grade 0 in Functional Systems [FS]; Cerebral grade 1 acceptable) (0 )
CL Item
No disability, minimal signs in one FS (ie, grade 1 excluding Cerebral grade 1) (1.0 )
CL Item
No disability minimal signs in more than one FS (more than one grade 1 excluding Cerebral grade 1) (1.5 )
CL Item
Minimal disability in one FS (one FS grade 2, others 0 or 1) (2.0 )
CL Item
Minimal disability in two FS (two FS grade 2, others 0 or 1) (2.5 )
CL Item
Moderate disability in one FS (one FS grade 3, others 0 or l), or mild disability in three or four FS (three/four FS grade 2, others 0 or 1) though fully ambulatory (3.0 )
CL Item
Fully ambulatory but with moderate disability in one FS (one grade 3) and one or two FS grade 2; or two FS grade 3; or five FS grade 2 (others 0 or 1) (3.5 )
CL Item
Fully ambulatory without aid, self-sufficient, up and about some 12 hours a day despite relatively severe disability consisting of one FS grade 4 (others 0 or l), or combinations of lesser grades exceeding limits of previous steps. Able to walk without aid or rest some 500 meters. (4.0 )
CL Item
Fully ambulatory without aid, up and about much of the day, able to work a full day, may otherwise have some limitation of full activity or require minimal assistance; characterized by relatively severe disability, usually consisting of one FS grade 4 (others 0 or 1) or combinations of lesser grades exceeding limits of previous steps. Able to walk without aid or rest for some 300 meters. (4.5 )
CL Item
Ambulatory without aid or rest for about 200 meters; disability severe enough to impair full daily activities (eg, to work full day without special provisions). (Usual FS equivalents are one grade 5 alone, others 0 or 1; or combinations of lesser grades usually exceeding specifications for step 4.0.) (5.0 )
CL Item
Ambulatory without aid or rest for about 100 meters; disability severe enough to preclude full daily activities. (Usual FS equivalents are one grade 5 alone, others 0 or 1; or combinations of lesser grades usually exceeding those for step 4.0.) (5.5 )
CL Item
Intermittent or unilateral constant assistance (cane, crutch, or brace) required to walk about 100 meters with or without resting. (Usual FS equivalents are combinations with more than two FS grade 3+.) (6.0 )
CL Item
Constant bilateral assistance (canes, crutches, or braces) required to walk about 20 meters without resting. (Usual FS equivalents are combinations with more than two FS grade 3+.) (6.5 )
CL Item
Unable to walk beyond about 5 meters even with aid, essentially restricted to wheelchair; wheels self in standard wheelchair and transfers alone; up and about in w/c some 12 hours a day. (Usual FS equivalents are combinations with more than one FS grade 4+; very rarely, pyramidal grade 5 alone.) (7.0 )
CL Item
Unable to take more than a few steps; restricted to wheelchair; may need aid in transfer; wheels self but cannot carry on in standard wheelchair a full day; may require motorized wheelchair. (Usual FS equivalents are combinations with more than one FS grade 4+.) (7.5 )
CL Item
Essentially restricted to bed or chair or perambulated in wheelchair, but may be out of bed itself much of the day; retains many self-care functions; generally has effective use of arms. (Usual FS equivalents are combinations, generally grade 4+ in several systems.) (8.0 )
CL Item
Essentially restricted to bed much of the day; has some effective use of arm(s); retains some self-care functions. (Usual FS equivalents are combinations, generally 4+ in several systems.) (8.5 )
CL Item
Helpless bed patient; can communicate and eat. (Usual FS equivalents are combinations, mostly grade 4+.) (9.0 )
CL Item
Totally helpless bed patient; unable to communicate effectively or eat/swallow. (Usual FS equivalents are combinations, almost all grade 4+.) (9.5 )
CL Item
Death due to MS (10 )
CL Item
Normal (0 )
CL Item
Abnormal signs without disability (1 )
CL Item
Minimal disability (2 )
CL Item
Mild or moderate paraparesis or hemiparesis; severe monoparesis (3 )
CL Item
Marked paraparesis or hemiparesis; moderate quadriparesis; or monoplegia (4 )
CL Item
Paraplegia, hemiplegia, or marked quadriparesis (5 )
CL Item
Quadriplegia (6 )
CL Item
Unknown (V )
CL Item
Normal (0 )
CL Item
Vibration or figure-writing decrease only, in one or two limbs (1 )
CL Item
Mild decrease in touch or pain or position sense, and/or moderate decrease in vibration in one or two limbs; or vibratory (c/s figure writing) decrease alone in three or four limbs (2 )
CL Item
Moderate decrease in touch or pain or position sense, and/or essentially lost vibration in one or two limbs; or mild decrease in touch or pain and/or moderate decrease in all proprioceptive tests in three or four limbs (3 )
CL Item
Marked decrease in touch or pain or loss of proprioception, alone or combined, in one or two limbs; or moderate decrease in touch or pain and/or severe proprioceptive decrease in more than two limbs (4 )
CL Item
Loss (essentially) of sensation in one or two limbs; or moderate decrease in touch or pain and/or loss of proprioception for most of the body below the head (5 )
CL Item
Sensation essentially lost below the head (6 )
CL Item
Unknown (V )
CL Item
Normal (0 )
CL Item
Mood alteration only (Does not affect DSS score) (1 )
CL Item
Mild decrease in mentation (2 )
CL Item
Moderate decrease in mentation (3 )
CL Item
Marked decrease in mentation (chronic brain syndrome-moderate) (4 )
CL Item
Dementia or chronic brain syndrome-severe or incompetent (5 )
CL Item
Unknown (V )
CL Item
Normal (0 )
CL Item
Abnormal signs without disability (1 )
CL Item
Mild ataxia (2 )
CL Item
Moderate truncal or limb ataxia (3 )
CL Item
Severe ataxia, all limbs (4 )
CL Item
Unable to perform coordinated movements due to ataxia (5 )
CL Item
Unknown (V )
CL Item
Is used throughout after each number when weakness (grade 3 or more on pyramidal) interferes with testing (X )
CL Item
Normal (0 )
CL Item
Mild urinary hesitancy, urgency, or retention (1 )
CL Item
Moderate hesitancy, urgency, retention of bowel or bladder, or rare urinary incontinence (2 )
CL Item
Frequent urinary incontinence (3 )
CL Item
In need of almost constant catheterization (4 )
CL Item
Loss of bladder function (5 )
CL Item
Loss of bowel and bladder function (6 )
CL Item
Unknown (V )
CL Item
Normal (0 )
CL Item
Signs only (1 )
CL Item
Moderate nystagmus or other mild disability (2 )
CL Item
Severe nystagmus, marked extraocular weakness, or moderate disability of other cranial nerves (3 )
CL Item
Marked dysarthria or other marked disability (4 )
CL Item
Inability to swallow or speak (5 )
CL Item
Unknown (V )
CL Item
Normal (0 )
CL Item
Scotoma with visual acuity (corrected) better than 20/30 (1 )
CL Item
Worse eye with scotoma with maximal visual acuity (corrected) of 20/30 to 20/59 (2 )
CL Item
Worse eye with large scotoma, or moderate decrease in fields, but with maximal visual acuity (corrected) of 20/60 to 20/99 (3 )
CL Item
Worse eye with marked decrease of fields and maximal visual acuity (corrected) of 20/100 to 20/200; grade 3 plus maximal acuity of better eye of 20/60 or less (4 )
CL Item
Worse eye with maximal visual acuity (corrected) less than 20/200; grade 4 plus maximal acuity of better eye of 20/60 or less (5 )
CL Item
Grade 5 plus maximal visual acuity of better eye of 20/60 or less (6 )
CL Item
Unknown (V )
CL Item
Is added to grades 0 to 6 for presence of temporal pallor (X )
CL Item
Asymptomatic; fully active. (0 )
CL Item
Walks normally, but reports fatigue that interferes with athletic or other demanding activities. (1 )
CL Item
Abnormal gait or episodic imbalance; gait disorder is noticed by family and friends; able to walk 25 feet (8 meters) in 10 seconds or less. (2 )
CL Item
Walks independently; able to walk 25 feet in 20 seconds or less. (3 )
CL Item
Requires unilateral support (cane or single crutch) to walk; walks 25 feet in 20 seconds or less. (4 )
CL Item
Requires bilateral support (canes, crutches, or walker) and walks 25 feet in 20 seconds or less; or requires unilateral support but needs more than 20 seconds to walk 25 feet. (5 )
CL Item
Requires bilateral support and more than 20 seconds to walk 25 feet; may use wheelchair on occasion. (6 )
CL Item
Walking limited to several steps with bilateral support; unable to walk 25 feet; may use wheelchair* for most activities. (7 )
CL Item
Restricted to wheelchair; able to transfer self independently. (8 )
CL Item
Restricted to wheelchair; unable to transfer self independently. (9 )
Item
Active ingredient in current therapy
text
C2827774 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,2])
CL Item
Glatirameracetat (Copaxone) (6)
C0289884 (UMLS CUI-1)
CL Item
Interferon-ß 1a i.m. (Avonex) (19)
C0254119 (UMLS CUI-1)
C0021492 (UMLS CUI-2)
C0021492 (UMLS CUI-2)
CL Item
Interferon-ß 1a s.c. (Rebif 22 µg, Rebif 44 µg) (20)
C0254119 (UMLS CUI-1)
CL Item
Interferon-ß 1b s.c. (Betaferon, Extavia) (21)
C0244713 (UMLS CUI-1)
CL Item
Fumarate (BG-12; Tecfidera) (24)
C0058218 (UMLS CUI-1)
CL Item
Teriflunomide (Aubagio) (23)
C1718383 (UMLS CUI-1)
CL Item
Azathioprine (2)
C0004482 (UMLS CUI-1)
CL Item
Intravenous immune globulins (IVIg) (7)
C0021027 (UMLS CUI-1)
CL Item
Alemtuzumab (Lemtrada) (22)
C0383429 (UMLS CUI-1)
CL Item
Fingolimod (Gilenya) (18)
C1699926 (UMLS CUI-1)
CL Item
Natalizumab (Tysabri) (11)
C1172734 (UMLS CUI-1)
CL Item
Mitoxantrone (10)
C0026259 (UMLS CUI-1)
CL Item
Cyclophosphamide (4)
C0010583 (UMLS CUI-1)
CL Item
Methotrexate (9)
C0025677 (UMLS CUI-1)
CL Item
Rituximab (14)
C0393022 (UMLS CUI-1)
CL Item
PEG-Interferon-ß 1a s.c. (3)
CL Item
* Medication from a MS study (8)
C0013175 (UMLS CUI-1)
C0013227 (UMLS CUI-2)
C0013227 (UMLS CUI-2)
CL Item
Others... (99)
C1115771 (UMLS CUI-1)
Other Current Agent
Item
Other active ingredient in current therapy
text
C2827774 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
C0205394 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
Start Date Current Therapy
Item
Start date of current therapy
date
C3173309 (UMLS CUI [1,1])
C2827774 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
C2827774 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
Previous Therapy MS
Item
Was a disease-modifying MS therapy previously conducted?
boolean
C2114510 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,2])
Item
Active ingredient in previous therapy
integer
C2114510 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,2])
CL Item
Alemtuzumab (Lemtrada) (22)
C0383429 (UMLS CUI-1)
CL Item
Azathioprine (2)
C0004482 (UMLS CUI-1)
CL Item
Cyclophosphamide (4)
C0010583 (UMLS CUI-1)
CL Item
Fingolimod (Gilenya) (18)
C1699926 (UMLS CUI-1)
CL Item
Fumarate (BG-12; Tecfidera) (24)
C0058218 (UMLS CUI-1)
CL Item
COPAXONE (Copaxone) (6)
C0289884 (UMLS CUI-1)
CL Item
Immune Globulins (7)
C0021027 (UMLS CUI-1)
CL Item
Interferon ß-1A (Avonex) (19)
C0254119 (UMLS CUI-1)
C0021492 (UMLS CUI-2)
C0021492 (UMLS CUI-2)
CL Item
Interferon ß-1A SC (Rebif 22 µg, Rebif 44 µg) (20)
C0254119 (UMLS CUI-1)
CL Item
Interferon ß 1SC (Betaseron, Extavia) (21)
C0244713 (UMLS CUI-1)
CL Item
* Medication from a MS study (8)
C0013175 (UMLS CUI-1)
C0013227 (UMLS CUI-2)
C0013227 (UMLS CUI-2)
CL Item
Methotrexate (9)
C0025677 (UMLS CUI-1)
CL Item
Mitoxantrone (10)
C0026259 (UMLS CUI-1)
CL Item
Natalizumab (Tysabri) (11)
C1172734 (UMLS CUI-1)
CL Item
Rituximab (14)
C0393022 (UMLS CUI-1)
CL Item
Teriflunomide (Aubagio) (23)
C1718383 (UMLS CUI-1)
CL Item
Cortisone (25)
C0010137 (UMLS CUI-1)
CL Item
Others... (99)
C1115771 (UMLS CUI-1)
Other Previous Agent
Item
Other active ingredient of previous therapy
text
C2114510 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
C0205394 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
Start Date Previous Therapy
Item
Start date of previous therapy
date
C3173309 (UMLS CUI [1,1])
C2114510 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
C2114510 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
End Date Previous Therapy
Item
End date of previous therapy
date
C1531784 (UMLS CUI [1,1])
C2114510 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
C2114510 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
Item
Main reason for stopping the previous therapy
integer
C0850893 (UMLS CUI [1,1])
C0566251 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
C0566251 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
CL Item
Side effects (1)
C0877248 (UMLS CUI-1)
CL Item
Lack effectiveness (2)
C0235828 (UMLS CUI-1)
CL Item
Another reason (99)
C0205394 (UMLS CUI-1)
Other Reason Stop Therapy
Item
If other reasion for stopping previous therapy, please indicate the reason
text
C3840932 (UMLS CUI [1,1])
C0850893 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
C0850893 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
MRI
Item
MRI available?
boolean
C0024485 (UMLS CUI [1])
MRI Date
Item
Date of MRI
date
C0024485 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
C0011008 (UMLS CUI [1,2])
Item
Amount of T2 lesions
integer
C0412676 (UMLS CUI [1,1])
C0221198 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
C0221198 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
CL Item
0 (1)
CL Item
1-8 (2)
CL Item
≤9 (3)
MRI T1 Lesions
Item
T1 lesions?
boolean
C2029669 (UMLS CUI [1,1])
C0221198 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
C0221198 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
Gd-Enhancing Lesions
Item
Gadolinium-enhancing lesions?
boolean
C1333400 (UMLS CUI [1])