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Inflammatory demyelinating diseases CNS Core Data Set

German English

Inflammatory demyelinating diseases CNS Core Data Set

1 forms  
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

Data type

text

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

Other CNS demyelinating disorder

Data type

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0205394
Date of onset
Description

Date of Onset

Data type

date

Alias
UMLS CUI [1]
C0574845
Date of diagnosis
Description

Date of Diagnosis

Data type

date

Alias
UMLS CUI [1]
C2316983
Current Flare
Description

Current Flare

Current flare?
Description

Current flare

Data type

boolean

Alias
UMLS CUI [1,1]
C1517205
UMLS CUI [1,2]
C0521116
Current Therapy Flare
Description

Therapy Flare

Data type

text

Alias
UMLS CUI [1,1]
C1517205
UMLS CUI [1,2]
C2827774
Other therapy for current flare
Description

Other Therapy Flare

Data type

text

Alias
UMLS CUI [1,1]
C0205394
UMLS CUI [1,2]
C2827774
UMLS CUI [1,3]
C1517205
Start date of current flare therapy
Description

Start Date Current Flare Therapy

Data type

date

Alias
UMLS CUI [1]
C3173309
Multiple Sclerosis
Description

Multiple Sclerosis

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

Clinical Course MS

Data type

integer

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

Other clinical course MS

Data type

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0205394
Neuromyelitis optica
Description

Neuromyelitis optica

Alias
UMLS CUI-1
C0027873
Clinical course of NMO Spectrum Disorder
Description

Clinical course NMO

Data type

text

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

Other clinical course NMO

Data type

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0205394
Aquaporin-4 antibody
Description

Aquaporin-4 antibody

Data type

text

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

anti-MOG antibody

Data type

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

Data type

text

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

Other clinical course ADEM

Data type

text

Alias
UMLS CUI [1,1]
C0449259
UMLS CUI [1,2]
C0205394
EDSS
Description

EDSS

Today's EDSS
Description

Current EDSS

Data type

text

Alias
UMLS CUI [1]
C3830336
Current MS therapy
Description

Current MS therapy

Active ingredient in current therapy
Description

Current Agent

Data type

text

Alias
UMLS CUI [1,1]
C2827774
UMLS CUI [1,2]
C0026769
Other active ingredient in current therapy
Description

Other Current Agent

Data type

text

Alias
UMLS CUI [1,1]
C2827774
UMLS CUI [1,2]
C0205394
UMLS CUI [1,3]
C0026769
Start date of current therapy
Description

Start Date Current Therapy

Data type

date

Alias
UMLS CUI [1,1]
C3173309
UMLS CUI [1,2]
C2827774
UMLS CUI [1,3]
C0026769
Previous disease-modifying MS-Medication
Description

Previous disease-modifying MS-Medication

Was a disease-modifying MS therapy previously conducted?
Description

Previous Therapy MS

Data type

boolean

Alias
UMLS CUI [1,1]
C2114510
UMLS CUI [1,2]
C0026769
Active ingredient in previous therapy
Description

Previous Agent

Data type

integer

Alias
UMLS CUI [1,1]
C2114510
UMLS CUI [1,2]
C0026769
Other active ingredient of previous therapy
Description

Other Previous Agent

Data type

text

Alias
UMLS CUI [1,1]
C2114510
UMLS CUI [1,2]
C0205394
UMLS CUI [1,3]
C0026769
Start date of previous therapy
Description

Start Date Previous Therapy

Data type

date

Alias
UMLS CUI [1,1]
C3173309
UMLS CUI [1,2]
C2114510
UMLS CUI [1,3]
C0026769
End date of previous therapy
Description

End Date Previous Therapy

Data type

date

Alias
UMLS CUI [1,1]
C1531784
UMLS CUI [1,2]
C2114510
UMLS CUI [1,3]
C0026769
Main reason for stopping the previous therapy
Description

Reason Stop Therapy

Data type

integer

Alias
UMLS CUI [1,1]
C0850893
UMLS CUI [1,2]
C0566251
UMLS CUI [1,3]
C0026769
If other reason for stopping previous therapy, please indicate the reason
Description

Other Reason Stop Therapy

Data type

text

Alias
UMLS CUI [1,1]
C3840932
UMLS CUI [1,2]
C0850893
UMLS CUI [1,3]
C0026769
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Similar models

Inflammatory demyelinating diseases CNS Core Data Set

1 forms
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)
Item
Current Diagnosis
text
C0011900 (UMLS CUI [1])
current diagnosis
Code List
Current Diagnosis
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])
Date of Onset
Item
Date of onset
date
C0574845 (UMLS CUI [1])
Date of Diagnosis
Item
Date of diagnosis
date
C2316983 (UMLS CUI [1])
Item Group
Current Flare
Current flare
Item
Current flare?
boolean
C1517205 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
Item
Current Therapy Flare
text
C1517205 (UMLS CUI [1,1])
C2827774 (UMLS CUI [1,2])
Therapy Flare
Code List
Current Therapy Flare
CL Item
Methylprednisolone (25)
CL Item
Plasmaseparation (1)
CL Item
other (2)
Other Therapy Flare
Item
Other therapy for current flare
text
C0205394 (UMLS CUI [1,1])
C2827774 (UMLS CUI [1,2])
C1517205 (UMLS CUI [1,3])
Start Date Current Flare Therapy
Item
Start date of current flare therapy
date
C3173309 (UMLS CUI [1])
Item Group
Multiple Sclerosis
C0026769 (UMLS CUI-1)
Item
Clinical course of multiple sclerosis
integer
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) (2)
CL Item
Secondary progressive MS (SPMS) (3)
CL Item
Primary progressive MS (PPMS) (4)
CL Item
unknown (-1)
CL Item
Others (5)
Other clinical course MS
Item
Other clinical course
text
C0449259 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
Item Group
Neuromyelitis optica
C0027873 (UMLS CUI-1)
Item
Clinical course of NMO Spectrum Disorder
text
C0449259 (UMLS CUI [1,1])
C0027873 (UMLS CUI [1,2])
Neuromyelitis Optica
Code List
Clinical course of NMO Spectrum Disorder
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])
Item
Aquaporin-4 antibody
text
C2919772 (UMLS CUI [1])
Aquaporin-4 antibody
Code List
Aquaporin-4 antibody
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])
myelin oligodendrocyte glycoprotein
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])
Clinical course ADEM
Code List
Clinical course of ADEM
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])
Item Group
EDSS
Item
Today's EDSS
text
C3830336 (UMLS CUI [1])
Current EDSS
Code List
Today's EDSS
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 )
Item Group
Current MS therapy
Item
Active ingredient in current therapy
text
C2827774 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
curth1
Code List
Active ingredient in current therapy
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)
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
PEG-Interferon-ß 1a s.c. (3)
CL Item
Fumarate (BG-12; Tecfidera) (24)
C0058218 (UMLS CUI-1)
CL Item
Teriflunomide (Aubagio) (23)
C1718383 (UMLS CUI-1)
CL Item
Fingolimod (Gilenya) (18)
C1699926 (UMLS CUI-1)
CL Item
Natalizumab (Tysabri) (11)
C1172734 (UMLS CUI-1)
CL Item
Alemtuzumab (Lemtrada) (22)
C0383429 (UMLS CUI-1)
CL Item
Daclizumab (Zinbryta) (25)
C0383429 (UMLS CUI-1)
CL Item
Rituximab (14)
C0393022 (UMLS CUI-1)
CL Item
Mitoxantrone (10)
C0026259 (UMLS CUI-1)
CL Item
Azathioprine (2)
C0004482 (UMLS CUI-1)
CL Item
Intravenous immune globulins (IVIg) (7)
C0021027 (UMLS CUI-1)
CL Item
Cyclophosphamide (4)
C0010583 (UMLS CUI-1)
CL Item
Methotrexate (9)
C0025677 (UMLS CUI-1)
CL Item
* Medication from a MS study (8)
C0013175 (UMLS CUI-1)
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])
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])
Item Group
Previous disease-modifying MS-Medication
Previous Therapy MS
Item
Was a disease-modifying MS therapy previously conducted?
boolean
C2114510 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
Item
Active ingredient in previous therapy
integer
C2114510 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
curth1
Code List
Active ingredient in previous therapy
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)
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
PEG-Interferon-ß 1a s.c. (3)
CL Item
Fumarate (BG-12; Tecfidera) (24)
C0058218 (UMLS CUI-1)
CL Item
Teriflunomide (Aubagio) (23)
C1718383 (UMLS CUI-1)
CL Item
Fingolimod (Gilenya) (18)
C1699926 (UMLS CUI-1)
CL Item
Natalizumab (Tysabri) (11)
C1172734 (UMLS CUI-1)
CL Item
Alemtuzumab (Lemtrada) (22)
C0383429 (UMLS CUI-1)
CL Item
Daclizumab (Zinbryta) (25)
C0383429 (UMLS CUI-1)
CL Item
Rituximab (14)
C0393022 (UMLS CUI-1)
CL Item
Mitoxantrone (10)
C0026259 (UMLS CUI-1)
CL Item
Azathioprine (2)
C0004482 (UMLS CUI-1)
CL Item
Intravenous immune globulins (IVIg) (7)
C0021027 (UMLS CUI-1)
CL Item
Cyclophosphamide (4)
C0010583 (UMLS CUI-1)
CL Item
Methotrexate (9)
C0025677 (UMLS CUI-1)
CL Item
* Medication from a MS study (8)
C0013175 (UMLS CUI-1)
C0013227 (UMLS CUI-2)
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])
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])
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])
Item
Main reason for stopping the previous therapy
integer
C0850893 (UMLS CUI [1,1])
C0566251 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
Therapieende
Code List
Main reason for stopping the previous therapy
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 reason for stopping previous therapy, please indicate the reason
text
C3840932 (UMLS CUI [1,1])
C0850893 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
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