ID

42834

Description

Common Data Elements for Neuroinflammatory Demyelinating Diseases of the central nervous system (NID CDEs). The NID CDEs may be used in clinical routine, clinical trial and registry documentation of Multiple Sclerosis (MS), Neuromyelitis Optica Spectrum Disorders (NMOSD) and Acute Disseminated Encephalomyelitis (ADEM). The NID CDEs were developed by the Institute of Medical Informatics of the University Muenster in cooperation with the Department of Neurology of the University Hospital Muenster.

Mots-clés

Versions (16)
  1. 08/12/2016 08/12/2016 -
  2. 17/01/2017 17/01/2017 -
  3. 17/01/2017 17/01/2017 -
  4. 23/01/2017 23/01/2017 -
  5. 23/01/2017 23/01/2017 -
  6. 26/01/2017 26/01/2017 -
  7. 07/02/2017 07/02/2017 -
  8. 15/02/2017 15/02/2017 -
  9. 13/03/2017 13/03/2017 -
  10. 13/03/2017 13/03/2017 -
  11. 07/06/2017 07/06/2017 -
  12. 07/06/2017 07/06/2017 -
  13. 04/12/2017 04/12/2017 -
  14. 25/01/2018 25/01/2018 -
  15. 27/02/2018 27/02/2018 -
  16. 17/09/2021 17/09/2021 -
Détendeur de droits

Sophia Gessner

Téléchargé le

17 septembre 2021

DOI

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Creative Commons BY-NC 3.0
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Neuroinflammatory demyelinating diseases CNS Common Data Elements

Allemand Anglais

Neuroinflammatory demyelinating diseases CNS Common Data Elements

1 Formulaires  
Diagnosis demyelinating disease of central nervous system
Description

Diagnosis demyelinating disease of central nervous system

Alias
UMLS CUI-1
C0011900
UMLS CUI-2
C0011302
Current diagnosis
Description

Current diagnosis

Type de données

text

Alias
UMLS CUI [1]
C0011900
Other CNS demyelinating disorder
Description

Other CNS demyelinating disorder

Type de données

text

Alias
UMLS CUI [1,1]
C0205394
UMLS CUI [1,2]
C0011302
Date of onset
Description

(dd/mm/yyyy)

Type de données

date

Alias
UMLS CUI [1]
C0574845
Date of diagnosis
Description

(dd/mm/yyyy)

Type de données

date

Alias
UMLS CUI [1]
C2316983
Multiple sclerosis
Description

Multiple sclerosis

Alias
UMLS CUI-1
C0026769
Clinical course of multiple sclerosis
Description

Clinical Course MS

Type de données

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0026769
Other clinical course
Description

Other clinical course MS

Type de données

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0205394
UMLS CUI [1,3]
C0026769
Neuromyelitis optica spectrum disorder (NMOSD)
Description

Neuromyelitis optica spectrum disorder (NMOSD)

Alias
UMLS CUI-1
C0027873
Clinical course of neuromyelitis optica spectrum disorder
Description

Clinical course NMOSD

Type de données

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0027873
Other clinical course
Description

Other clinical course NMOSD

Type de données

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0205394
UMLS CUI [1,3]
C0027873
Aquaporin-4 antibodies
Description

Aquaporin-4 antibody

Type de données

text

Alias
UMLS CUI [1]
C2919772
anti-MOG (Myelin oligodendrocyte glycoprotein) antibodies
Description

anti-MOG antibody

Type de données

text

Alias
UMLS CUI [1,1]
C0003241
UMLS CUI [1,2]
C3266851
Acute disseminated encephalomyelitis (ADEM)
Description

Acute disseminated encephalomyelitis (ADEM)

Alias
UMLS CUI-1
C0014059
Clinical course of ADEM
Description

Clinical course ADEM

Type de données

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0014059
Other clinical course
Description

Other clinical course ADEM

Type de données

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0205394
UMLS CUI [1,3]
C0014059
Cerebrospinal fluid analysis
Description

Cerebrospinal fluid analysis

Alias
UMLS CUI-1
C0007806
Has the CSF ever been analysed?
Description

CSF Analysis

Type de données

text

Alias
UMLS CUI [1,1]
C0007806
UMLS CUI [1,2]
C0936012
Oligoclonal bands
Description

CSF finding: Oligoclonal bands

Type de données

text

Alias
UMLS CUI [1]
C0201942
Pleocytosis
Description

CSF finding: pleocytosis

Type de données

text

Alias
UMLS CUI [1]
C1849424
Current relapse
Description

Current relapse

Alias
UMLS CUI-1
C0035020
Current relapse?
Description

Current relapse

Type de données

boolean

Alias
UMLS CUI [1]
C0035020
Therapy for current relapse
Description

Relapse Therapy

Type de données

text

Alias
UMLS CUI [1]
C0679868
Methylprednisolone regimen
Description

Methylprednisolone regimen

Type de données

text

Alias
UMLS CUI [1,1]
C0025815
UMLS CUI [1,2]
C0001555
Other therapy for current relapse
Description

Other Therapy relapse

Type de données

text

Alias
UMLS CUI [1,1]
C0205394
UMLS CUI [1,2]
C0679868
Start date of therapy of current relapse
Description

Start Date Current Relapse Therapy

Type de données

date

Alias
UMLS CUI [1,1]
C3173309
UMLS CUI [1,2]
C0679868
Previous relapses
Description

Previous relapses

Alias
UMLS CUI-1
C0035020
UMLS CUI-2
C0262926
Number of relapses in the past 12 months
Description

Current relapse is not to be counted to the total amount of relapses during the last 12 months

Type de données

text

Alias
UMLS CUI [1,1]
C0035020
UMLS CUI [1,2]
C3843288
Number of relapses in the past 24 months
Description

Current relapse is not to be counted to the total amount of relapses during the last 24 months

Type de données

text

Alias
UMLS CUI [1,1]
C0035020
UMLS CUI [1,2]
C3846158
Expanded Disability Status Scale (EDSS)
Description

Expanded Disability Status Scale (EDSS)

Alias
UMLS CUI-1
C3830336
Current EDSS
Description

(at discharge/outpatient contact)

Type de données

text

Alias
UMLS CUI [1]
C3830336
Current therapy
Description

Current therapy

Alias
UMLS CUI-1
C2827774
Current therapy
Description

Current therapy

Type de données

text

Alias
UMLS CUI [1]
C2827774
Other current therapy
Description

Please indicate other current therapy

Type de données

text

Alias
UMLS CUI [1,1]
C2827774
UMLS CUI [1,2]
C0205394
Reason missing therapy
Description

Reason No Therapy

Type de données

text

Alias
UMLS CUI [1,1]
C0746919
UMLS CUI [1,2]
C0566251
If other reason for missing therapy, please indicate the reason
Description

Other Reason No Therapy

Type de données

text

Alias
UMLS CUI [1,1]
C0746919
UMLS CUI [1,2]
C3840932
Start date of current therapy
Description

(dd/mm/yyyy)

Type de données

date

Alias
UMLS CUI [1,1]
C3173309
UMLS CUI [1,2]
C2827774
Risk stratification Natalizumab
Description

Risk stratification Natalizumab

Alias
UMLS CUI-1
C0150323
UMLS CUI-2
C1172734
Previous immunosuppressive therapy
Description

Previous immunosuppressive therapy

Type de données

boolean

Alias
UMLS CUI [1,1]
C0021079
UMLS CUI [1,2]
C2114510
Duration of therapy with Natalizumab
Description

Duration therapy Natalizumab

Type de données

text

Alias
UMLS CUI [1,1]
C0444921
UMLS CUI [1,2]
C1172734
Anti-JCV antibody measurement
Description

Anti-JCV antibody measurement

Type de données

text

Alias
UMLS CUI [1]
C3511565
Date Anti-JCV-antibody measurement
Description

(dd/mm/yyyy)

Type de données

date

Alias
UMLS CUI [1,1]
C3511565
UMLS CUI [1,2]
C0011008
Anti-JCV antibody index
Description

Anti-JCV antibody index

Type de données

text

Alias
UMLS CUI [1]
C3888491
L-selectine risk status
Description

L-selectine risk status

Type de données

text

Alias
UMLS CUI [1]
C0125090
Date L-selectine measurement
Description

(dd/mm/yyyy)

Type de données

date

Alias
UMLS CUI [1,1]
C0125090
UMLS CUI [1,2]
C0011008
Previous disease-modifying medication
Description

Previous disease-modifying medication

Alias
UMLS CUI-1
C2114510
Previous therapy
Description

Previous Therapy

Type de données

text

Alias
UMLS CUI [1]
C2114510
Other previous therapy
Description

Please indicate other previous therapy

Type de données

text

Alias
UMLS CUI [1,1]
C2114510
UMLS CUI [1,2]
C0205394
Start date of previous therapy
Description

(dd/mm/yyyy)

Type de données

date

Alias
UMLS CUI [1,1]
C3173309
UMLS CUI [1,2]
C2114510
End date of previous therapy
Description

(dd/mm/yyyy)

Type de données

date

Alias
UMLS CUI [1,1]
C1531784
UMLS CUI [1,2]
C2114510
Reason for stopping previous therapy
Description

Reason Stop Therapy

Type de données

text

Alias
UMLS CUI [1,1]
C0850893
UMLS CUI [1,2]
C0566251
If other reason for stopping previous therapy, please indicate the reason
Description

Other Reason Stop Therapy

Type de données

text

Alias
UMLS CUI [1,1]
C3840932
UMLS CUI [1,2]
C0850893
MRI results
Description

MRI results

Alias
UMLS CUI-1
C0024485
Has ever been taken an MRI?
Description

MRI

Type de données

boolean

Alias
UMLS CUI [1]
C0024485
Region MRI was taken from
Description

MRI

Type de données

text

Alias
UMLS CUI [1,1]
C0024485
UMLS CUI [1,2]
C0229962
Acute disease activity visible in MRI
Description

Acute activity

Type de données

boolean

Alias
UMLS CUI [1,1]
C0035020
UMLS CUI [1,2]
C0024485
Comparison previous MRI
Description

Comparison previous MRI

Type de données

text

Alias
UMLS CUI [1,1]
C1261322
UMLS CUI [1,2]
C0242656
Other medical information
Description

Other medical information

Alias
UMLS CUI-1
C2598196
Other medical information
Description

Other medical information

Type de données

text

Alias
UMLS CUI [1]
C2598196
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Similar models

Neuroinflammatory demyelinating diseases CNS Common Data Elements

1 Formulaires
Name
Type
Description | Question | Decode (Coded Value)
Type de données
Alias
Item Group
Diagnosis demyelinating disease of central nervous system
C0011900 (UMLS CUI-1)
C0011302 (UMLS CUI-2)
Item
Current diagnosis
text
C0011900 (UMLS CUI [1])
current diagnosis
Code List
Current diagnosis
CL Item
Radiologically Isolated Syndrome (RIS) (RIS)
(Comment:en)
C3846158 (UMLS CUI-1)
(Comment:de)
CL Item
Clinically Isolated Syndrome (CIS) (CIS)
(Comment:en)
C2350037 (UMLS CUI-1)
(Comment:de)
CL Item
Multiple Sclerosis (MS)  (MS)
(Comment:en)
C0026769 (UMLS CUI-1)
(Comment:de)
CL Item
Neuromyelitis Optica Spectrum Disorder (NMOSD)  (NMOSD)
(Comment:en)
C0027873 (UMLS CUI-1)
(Comment:de)
CL Item
Acute Disseminated Encephalomyelitis (ADEM) (ADEM)
(Comment:en)
C0014059 (UMLS CUI-1)
(Comment:de)
CL Item
Other CNS demyelinating disorder (Other)
(Comment:en)
C0205394 (UMLS CUI-1)
C0011302 (UMLS CUI-2)
(Comment:de)
Other CNS demyelinating disorder
Item
Other CNS demyelinating disorder
text
C0205394 (UMLS CUI [1,1])
C0011302 (UMLS CUI [1,2])
Onset Date
Item
Date of onset
date
C0574845 (UMLS CUI [1])
Diagnosis Date
Item
Date of diagnosis
date
C2316983 (UMLS CUI [1])
Item Group
Multiple sclerosis
C0026769 (UMLS CUI-1)
Item
Clinical course of multiple sclerosis
text
C0449259 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
Disease Course Multiple Sclerosis, Relapsing-Remitting
Code List
Clinical course of multiple sclerosis
CL Item
Relapsing-remitting MS (RRMS) (RRMS)
(Comment:en)
C0751967 (UMLS CUI-1)
(Comment:de)
CL Item
Secondary progressive MS (SPMS) (SPMS)
(Comment:en)
C0751965 (UMLS CUI-1)
(Comment:de)
CL Item
Primary progressive MS (PPMS) (PPMS)
(Comment:en)
C0751964 (UMLS CUI-1)
(Comment:de)
CL Item
Unknown (Unknown)
(Comment:en)
C0449259 (UMLS CUI-1)
C0439673 (UMLS CUI-2)
C0026769 (UMLS CUI-3)
(Comment:de)
CL Item
Other clinical course (Other)
(Comment:en)
C0449259 (UMLS CUI-1)
C0205394 (UMLS CUI-2)
C0026769 (UMLS CUI-3)
(Comment:de)
Other clinical course MS
Item
Other clinical course
text
C0449259 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
Item Group
Neuromyelitis optica spectrum disorder (NMOSD)
C0027873 (UMLS CUI-1)
Item
Clinical course of neuromyelitis optica spectrum disorder
text
C0449259 (UMLS CUI [1,1])
C0027873 (UMLS CUI [1,2])
Neuromyelitis Optica
Code List
Clinical course of neuromyelitis optica spectrum disorder
CL Item
Relapsing  (Relapsing)
(Comment:en)
C4087551 (UMLS CUI-1)
(Comment:de)
CL Item
Unknown  (Unknown)
(Comment:en)
C0449259 (UMLS CUI-1)
C0439673 (UMLS CUI-2)
C0027873 (UMLS CUI-3)
(Comment:de)
CL Item
Other clinical course (Other)
(Comment:en)
C0449259 (UMLS CUI-1)
C0205394 (UMLS CUI-2)
C0027873 (UMLS CUI-3)
(Comment:de)
CL Item
Monophasic (including LETM) (Monophasic LETM)
(Comment:en)
C4087481 (UMLS CUI-1)
C0026976 (UMLS CUI-2)
(Comment:de)
Other clinical course NMOSD
Item
Other clinical course
text
C0449259 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0027873 (UMLS CUI [1,3])
Item
Aquaporin-4 antibodies
text
C2919772 (UMLS CUI [1])
Aquaporin-4 antibody
Code List
Aquaporin-4 antibodies
CL Item
Seropositive (seropositive)
C0521143 (UMLS CUI-1)
(Comment:en)
CL Item
Seronegative (seronegative)
C0521144 (UMLS CUI-1)
(Comment:en)
CL Item
Not determined (not determined)
C0205258 (UMLS CUI-1)
(Comment:en)
Item
anti-MOG (Myelin oligodendrocyte glycoprotein) antibodies
text
C0003241 (UMLS CUI [1,1])
C3266851 (UMLS CUI [1,2])
myelin oligodendrocyte glycoprotein
Code List
anti-MOG (Myelin oligodendrocyte glycoprotein) antibodies
CL Item
Seropositive (seropositive)
C0521143 (UMLS CUI-1)
(Comment:en)
CL Item
Seronegative (seronegative)
C0521144 (UMLS CUI-1)
(Comment:en)
CL Item
Not determined (not determined)
C0205258 (UMLS CUI-1)
(Comment:en)
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])
Clinical course ADEM
Code List
Clinical course of ADEM
CL Item
Monophasic  (Monophasic)
(Comment:en)
C0014059 (UMLS CUI-1)
(Comment:de)
CL Item
Recurrent  (Recurrent)
(Comment:en)
C3266325 (UMLS CUI-1)
(Comment:de)
CL Item
Unknown  (Unknown)
(Comment:en)
C0449259 (UMLS CUI-1)
C0439673 (UMLS CUI-2)
(Comment:de)
CL Item
Other clinical course (Other)
(Comment:en)
C0449259 (UMLS CUI-1)
C0205394 (UMLS CUI-2)
(Comment:de)
Other clinical course ADEM
Item
Other clinical course
text
C0449259 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0014059 (UMLS CUI [1,3])
Item Group
Cerebrospinal fluid analysis
C0007806 (UMLS CUI-1)
Item
Has the CSF ever been analysed?
text
C0007806 (UMLS CUI [1,1])
C0936012 (UMLS CUI [1,2])
CSF Analysis
Code List
Has the CSF ever been analysed?
CL Item
yes (yes)
(Comment:de)
CL Item
no (no)
(Comment:de)
CL Item
unknown (unknown)
(Comment:de)
Item
Oligoclonal bands
text
C0201942 (UMLS CUI [1])
OCB
Code List
Oligoclonal bands
CL Item
positive (positive)
CL Item
negative (negative)
CL Item
not determined (not determined)
Item
Pleocytosis
text
C1849424 (UMLS CUI [1])
Pleocytosis
Code List
Pleocytosis
CL Item
yes (yes)
CL Item
no (no)
CL Item
not determined (not determined)
Item Group
Current relapse
C0035020 (UMLS CUI-1)
Current relapse
Item
Current relapse?
boolean
C0035020 (UMLS CUI [1])
Item
Therapy for current relapse
text
C0679868 (UMLS CUI [1])
Therapy Flare
Code List
Therapy for current relapse
CL Item
Methylprednisolone (Methylprednisolone)
C0025815 (UMLS CUI-1)
(Comment:en)
CL Item
Immunoadsorption (Immunoadsorption)
C0398341 (UMLS CUI-1)
(Comment:en)
CL Item
Other  (Other)
C0418967 (UMLS CUI-1)
C0679868 (UMLS CUI-2)
(Comment:en)
CL Item
No therapy for current relapse (No)
C0746919 (UMLS CUI-1)
C0679868 (UMLS CUI-2)
(Comment:en)
CL Item
Plasmapheresis (Plasmapheresis)
C0032134 (UMLS CUI-1)
(Comment:en)
Item
Methylprednisolone regimen
text
C0025815 (UMLS CUI [1,1])
C0001555 (UMLS CUI [1,2])
Methylprednisolone Therapy Scheme
Code List
Methylprednisolone regimen
CL Item
3 x 2000 mg (3 x 2000 mg)
(Comment:en)
CL Item
5 x 2000 mg (5 x 2000 mg)
(Comment:en)
CL Item
3 x 1000 mg  (3 x 1000 mg)
(Comment:en)
CL Item
5 x 1000 mg  (5 x 1000 mg)
(Comment:en)
CL Item
Other regimen (Other)
C1276413 (UMLS CUI-1)
C0205394 (UMLS CUI-2)
(Comment:en)
Other Therapy relapse
Item
Other therapy for current relapse
text
C0205394 (UMLS CUI [1,1])
C0679868 (UMLS CUI [1,2])
Start Date Current Relapse Therapy
Item
Start date of therapy of current relapse
date
C3173309 (UMLS CUI [1,1])
C0679868 (UMLS CUI [1,2])
Item Group
Previous relapses
C0035020 (UMLS CUI-1)
C0262926 (UMLS CUI-2)
Item
Number of relapses in the past 12 months
text
C0035020 (UMLS CUI [1,1])
C3843288 (UMLS CUI [1,2])
Relapse Frequency 12 months
Code List
Number of relapses in the past 12 months
CL Item
0 relapses (0)
CL Item
1 relapse (1)
CL Item
2 relapses (2)
CL Item
3 relapses (3)
CL Item
More than 3 relapses (>3)
CL Item
Unknown (Unknown)
Item
Number of relapses in the past 24 months
text
C0035020 (UMLS CUI [1,1])
C3846158 (UMLS CUI [1,2])
Relapse Frequency 12 months
Code List
Number of relapses in the past 24 months
CL Item
0 relapses (0)
(Comment:en)
(Comment:de)
CL Item
1 relapse (1)
(Comment:en)
(Comment:de)
CL Item
2 relapses (2)
(Comment:en)
(Comment:de)
CL Item
3 relapses (3)
(Comment:en)
(Comment:de)
CL Item
More than 3 relapses (>3)
(Comment:en)
(Comment:de)
CL Item
Unknown (Unknown)
(Comment:en)
(Comment:de)
Item Group
Expanded Disability Status Scale (EDSS)
C3830336 (UMLS CUI-1)
Item
Current EDSS
text
C3830336 (UMLS CUI [1])
Current EDSS
Code List
Current EDSS
CL Item
Normal neurologic exam (all grade 0 in Functional Systems [FS]; Cerebral grade 1 acceptable) (0)
(Comment:de)
CL Item
No disability, minimal signs in one FS (ie, grade 1 excluding Cerebral grade 1) (1.0)
(Comment:de)
CL Item
No disability minimal signs in more than one FS (more than one grade 1 excluding Cerebral grade 1) (1.5)
(Comment:de)
CL Item
Minimal disability in one FS (one FS grade 2, others 0 or 1) (2.0)
(Comment:de)
CL Item
Minimal disability in two FS (two FS grade 2, others 0 or 1) (2.5)
(Comment:de)
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)
(Comment:de)
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)
(Comment:de)
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)
(Comment:de)
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)
(Comment:de)
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)
(Comment:de)
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)
(Comment:de)
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)
(Comment:de)
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)
(Comment:de)
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)
(Comment:de)
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)
(Comment:de)
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)
(Comment:de)
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)
(Comment:de)
CL Item
Helpless bed patient; can communicate and eat. (Usual FS equivalents are combinations, mostly grade 4+.) (9.0)
(Comment:de)
CL Item
Totally helpless bed patient; unable to communicate effectively or eat/swallow. (Usual FS equivalents are combinations, almost all grade 4+.) (9.5)
(Comment:de)
CL Item
Death due to MS (10)
(Comment:de)
Item Group
Current therapy
C2827774 (UMLS CUI-1)
Item
Current therapy
text
C2827774 (UMLS CUI [1])
curth1
Code List
Current therapy
CL Item
Glatirameracetat (Copaxone) (Glatirameracetat)
(Comment:en)
C1236476 (UMLS CUI-1)
(Comment:de)
CL Item
Fumarate (BG-12; Tecfidera) (Fumarate)
(Comment:en)
C0058218 (UMLS CUI-1)
(Comment:de)
CL Item
Teriflunomide (Aubagio) (Teriflunomide)
(Comment:en)
C1718383 (UMLS CUI-1)
(Comment:de)
CL Item
Fingolimod (Gilenya) (Fingolimod)
(Comment:en)
C1699926 (UMLS CUI-1)
(Comment:de)
CL Item
Natalizumab (Tysabri) (Natalizumab)
(Comment:en)
C1172734 (UMLS CUI-1)
(Comment:de)
CL Item
Alemtuzumab (Lemtrada) (Alemtuzumab)
(Comment:en)
C0383429 (UMLS CUI-1)
(Comment:de)
CL Item
Daclizumab (Zinbryta) (Daclizumab)
C0663182 (UMLS CUI-1)
(Comment:de)
CL Item
Ocrelizumab (Ocrelizumab)
C1882138 (UMLS CUI-1)
(Comment:de)
CL Item
Rituximab (Rituximab)
C0393022 (UMLS CUI-1)
(Comment:de)
CL Item
Tocilizumab (Tocilizumab)
C1609165 (UMLS CUI-1)
(Comment:de)
CL Item
Mitoxantrone (Mitoxantrone)
C0026259 (UMLS CUI-1)
(Comment:de)
CL Item
Azathioprine (Azathioprine)
C0004482 (UMLS CUI-1)
(Comment:de)
CL Item
Intravenous immune globulins (IVIg) (IVIg)
C0085297 (UMLS CUI-1)
(Comment:de)
CL Item
Cyclophosphamide (Cyclophosphamide)
C0010583 (UMLS CUI-1)
(Comment:de)
CL Item
Methotrexate (Methotrexate)
C0025677 (UMLS CUI-1)
(Comment:de)
CL Item
Recurrent steroide pulse therapy (Recurrent steroide pulse therapy)
C0587279 (UMLS CUI-1)
(Comment:de)
CL Item
Study medication (Study Medication)
C0304229 (UMLS CUI-1)
(Comment:de)
CL Item
Other therapy (Other)
C2827774 (UMLS CUI-1)
C0205394 (UMLS CUI-2)
(Comment:de)
CL Item
No therapy (No therapy)
C0746919 (UMLS CUI-1)
(Comment:de)
CL Item
Interferon-ß 1a i.m. (Avonex) (Interferon-ß 1a i.m)
CL Item
Interferon-ß 1a s.c. (Rebif 22 µg, Rebif 44 µg) (Interferon-ß 1a s.c.)
CL Item
Interferon-ß 1b s.c. (Betaferon, Extavia) (Interferon-ß 1b s.c.)
CL Item
PEG-Interferon-ß 1a s.c. (PEG-Interferon-ß 1a s.c.)
Other Current Therapy
Item
Other current therapy
text
C2827774 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
Item
Reason missing therapy
text
C0746919 (UMLS CUI [1,1])
C0566251 (UMLS CUI [1,2])
undefined item
Code List
Reason missing therapy
CL Item
Lack of effectiveness (Lack of effectiveness)
C0235828 (UMLS CUI-1)
(Comment:en)
CL Item
No appropriate therapy available (No appropriate therapy available)
C0554849 (UMLS CUI-1)
C1523987 (UMLS CUI-2)
(Comment:en)
CL Item
Desire to have children (Desire to have children)
C0009861 (UMLS CUI-1)
(Comment:en)
CL Item
Abnormal lab values (Abnormal lab values)
C0438215 (UMLS CUI-1)
(Comment:en)
CL Item
Lack of compliance (Lack of compliance)
C0457432 (UMLS CUI-1)
(Comment:en)
CL Item
Side effects (Side effects)
C0559546 (UMLS CUI-1)
(Comment:en)
CL Item
Patients wish (Patients wish)
C0747309 (UMLS CUI-1)
(Comment:en)
CL Item
Risk of progressive multifocal leukoencephalopathy (PML) (Risk of progressive multifocal leukoencephalopathy (PML))
C0023524 (UMLS CUI-1)
(Comment:en)
CL Item
Pregnancy (Pregnancy)
C0032961 (UMLS CUI-1)
(Comment:en)
CL Item
Intolerance (Intolerance)
C0277585 (UMLS CUI-1)
(Comment:en)
CL Item
Other reason (Other reason)
C3840932 (UMLS CUI-1)
C0850893 (UMLS CUI-2)
(Comment:en)
Other Reason No Therapy
Item
If other reason for missing therapy, please indicate the reason
text
C0746919 (UMLS CUI [1,1])
C3840932 (UMLS CUI [1,2])
Start Date Current Therapy
Item
Start date of current therapy
date
C3173309 (UMLS CUI [1,1])
C2827774 (UMLS CUI [1,2])
Item Group
Risk stratification Natalizumab
C0150323 (UMLS CUI-1)
C1172734 (UMLS CUI-2)
Previous immunosuppressive therapy
Item
Previous immunosuppressive therapy
boolean
C0021079 (UMLS CUI [1,1])
C2114510 (UMLS CUI [1,2])
Item
Duration of therapy with Natalizumab
text
C0444921 (UMLS CUI [1,1])
C1172734 (UMLS CUI [1,2])
Duration therapy Natalizumab
Code List
Duration of therapy with Natalizumab
CL Item
less than or equal 24 months (24)
CL Item
more than 24 months (25)
Item
Anti-JCV antibody measurement
text
C3511565 (UMLS CUI [1])
Anti-JCV-antibodies
Code List
Anti-JCV antibody measurement
CL Item
Seropositive (Seropositive)
CL Item
Seronegative (Seronegative)
CL Item
Not determined (Not determined)
Date Anti-JCV-antibody measurement
Item
Date Anti-JCV-antibody measurement
date
C3511565 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Item
Anti-JCV antibody index
text
C3888491 (UMLS CUI [1])
anti-JCV antibody index
Code List
Anti-JCV antibody index
CL Item
< 0,9 (0,9)
CL Item
0,9 - 1,5 (1,0)
CL Item
> 1,5 (1,5)
Item
L-selectine risk status
text
C0125090 (UMLS CUI [1])
L-selectine risk status
Code List
L-selectine risk status
CL Item
Negative (Negative)
CL Item
Borderline (Borderline)
CL Item
Positive (Positive)
Date L-selectine measurement
Item
Date L-selectine measurement
date
C0125090 (UMLS CUI [1,1])
C0011008 (UMLS CUI [1,2])
Item Group
Previous disease-modifying medication
C2114510 (UMLS CUI-1)
Item
Previous therapy
text
C2114510 (UMLS CUI [1])
curth1
Code List
Previous therapy
CL Item
Glatirameracetat (Copaxone) (Glatirameracetat)
(Comment:en)
C1236476 (UMLS CUI-1)
(Comment:de)
CL Item
Fumarate (BG-12; Tecfidera) (Fumarate)
(Comment:en)
C0058218 (UMLS CUI-1)
(Comment:de)
CL Item
Teriflunomide (Aubagio) (Teriflunomide)
(Comment:en)
C1718383 (UMLS CUI-1)
(Comment:de)
CL Item
Fingolimod (Gilenya) (Fingolimod)
(Comment:en)
C1699926 (UMLS CUI-1)
(Comment:de)
CL Item
Natalizumab (Tysabri) (Natalizumab)
(Comment:en)
C1172734 (UMLS CUI-1)
(Comment:de)
CL Item
Alemtuzumab (Lemtrada) (Alemtuzumab)
(Comment:en)
C0383429 (UMLS CUI-1)
(Comment:de)
CL Item
Daclizumab (Zinbryta) (Daclizumab)
C0663182 (UMLS CUI-1)
(Comment:de)
CL Item
Ocrelizumab (Ocrelizumab)
C1882138 (UMLS CUI-1)
(Comment:de)
CL Item
Rituximab (Rituximab)
C0393022 (UMLS CUI-1)
(Comment:de)
CL Item
Tocilizumab (Tocilizumab)
C1609165 (UMLS CUI-1)
(Comment:de)
CL Item
Mitoxantrone (Mitoxantrone)
C0026259 (UMLS CUI-1)
(Comment:de)
CL Item
Azathioprine (Azathioprine)
C0004482 (UMLS CUI-1)
(Comment:de)
CL Item
Intravenous immune globulins (IVIg) (IVIg)
C0085297 (UMLS CUI-1)
(Comment:de)
CL Item
Cyclophosphamide (Cyclophosphamide)
C0010583 (UMLS CUI-1)
(Comment:de)
CL Item
Methotrexate (Methotrexate)
C0025677 (UMLS CUI-1)
(Comment:de)
CL Item
Recurrent steroide pulse therapy (Recurrent steroide pulse therapy)
C0587279 (UMLS CUI-1)
(Comment:de)
CL Item
Study medication (Study Medication)
C0304229 (UMLS CUI-1)
(Comment:de)
CL Item
Other therapy (Other)
C2827774 (UMLS CUI-1)
C0205394 (UMLS CUI-2)
(Comment:de)
CL Item
No therapy (No therapy)
C0746919 (UMLS CUI-1)
(Comment:de)
CL Item
Interferon-ß 1a i.m. (Avonex) (Interferon-ß 1a i.m)
CL Item
Interferon-ß 1a s.c. (Rebif 22 µg, Rebif 44 µg) (Interferon-ß 1a s.c.)
CL Item
Interferon-ß 1b s.c. (Betaferon, Extavia) (Interferon-ß 1b s.c.)
CL Item
PEG-Interferon-ß 1a s.c. (PEG-Interferon-ß 1a s.c.)
Other Previous Therapy
Item
Other previous therapy
text
C2114510 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
Start Date Previous Therapy
Item
Start date of previous therapy
date
C3173309 (UMLS CUI [1,1])
C2114510 (UMLS CUI [1,2])
End Date Previous Therapy
Item
End date of previous therapy
date
C1531784 (UMLS CUI [1,1])
C2114510 (UMLS CUI [1,2])
Item
Reason for stopping previous therapy
text
C0850893 (UMLS CUI [1,1])
C0566251 (UMLS CUI [1,2])
undefined item
Code List
Reason for stopping previous therapy
CL Item
Lack of effectiveness (Lack of effectiveness)
C0235828 (UMLS CUI-1)
(Comment:en)
CL Item
No appropriate therapy available (No appropriate therapy available)
C0554849 (UMLS CUI-1)
C1523987 (UMLS CUI-2)
(Comment:en)
CL Item
Desire to have children (Desire to have children)
C0009861 (UMLS CUI-1)
(Comment:en)
CL Item
Abnormal lab values (Abnormal lab values)
C0438215 (UMLS CUI-1)
(Comment:en)
CL Item
Lack of compliance (Lack of compliance)
C0457432 (UMLS CUI-1)
(Comment:en)
CL Item
Side effects (Side effects)
C0559546 (UMLS CUI-1)
(Comment:en)
CL Item
Patients wish (Patients wish)
C0747309 (UMLS CUI-1)
(Comment:en)
CL Item
Risk of progressive multifocal leukoencephalopathy (PML) (Risk of progressive multifocal leukoencephalopathy (PML))
C0023524 (UMLS CUI-1)
(Comment:en)
CL Item
Pregnancy (Pregnancy)
C0032961 (UMLS CUI-1)
(Comment:en)
CL Item
Intolerance (Intolerance)
C0277585 (UMLS CUI-1)
(Comment:en)
CL Item
Other reason (Other reason)
C3840932 (UMLS CUI-1)
C0850893 (UMLS CUI-2)
(Comment:en)
Other Reason Stop Therapy
Item
If other reason for stopping previous therapy, please indicate the reason
text
C3840932 (UMLS CUI [1,1])
C0850893 (UMLS CUI [1,2])
Item Group
MRI results
C0024485 (UMLS CUI-1)
MRI
Item
Has ever been taken an MRI?
boolean
C0024485 (UMLS CUI [1])
Item
Region MRI was taken from
text
C0024485 (UMLS CUI [1,1])
C0229962 (UMLS CUI [1,2])
MRI
Code List
Region MRI was taken from
CL Item
head (cerebral)
C0412674 (UMLS CUI-1)
(Comment:en)
CL Item
spine (spinal)
C0177803 (UMLS CUI-1)
(Comment:en)
CL Item
head and spine (cerebrospinal)
C4039642 (UMLS CUI-1)
(Comment:en)
Acute activity
Item
Acute disease activity visible in MRI
boolean
C0035020 (UMLS CUI [1,1])
C0024485 (UMLS CUI [1,2])
Item
Comparison previous MRI
text
C1261322 (UMLS CUI [1,1])
C0242656 (UMLS CUI [1,2])
Comparison Previous MRI
Code List
Comparison previous MRI
CL Item
Progression (progress)
(Comment:de)
C0242656 (UMLS CUI-1)
(Comment:en)
CL Item
Unknown (Unknown)
(Comment:de)
C0439673 (UMLS CUI-1)
(Comment:en)
CL Item
Stable (stable)
C0677946 (UMLS CUI-1)
(Comment:en)
Item Group
Other medical information
C2598196 (UMLS CUI-1)
Other medical information
Item
Other medical information
text
C2598196 (UMLS CUI [1])
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