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ID
22548
Beskrivning
Inflammatory demyelinating diseases CNS Core Data Set with the adaption of item requests of UK Essen.
Nyckelord
Versioner (16)
- 2016-12-08 2016-12-08 -
- 2017-01-17 2017-01-17 -
- 2017-01-17 2017-01-17 -
- 2017-01-23 2017-01-23 -
- 2017-01-23 2017-01-23 -
- 2017-01-26 2017-01-26 -
- 2017-02-07 2017-02-07 -
- 2017-02-15 2017-02-15 -
- 2017-03-13 2017-03-13 -
- 2017-03-13 2017-03-13 -
- 2017-06-07 2017-06-07 -
- 2017-06-07 2017-06-07 -
- 2017-12-04 2017-12-04 -
- 2018-01-25 2018-01-25 -
- 2018-02-27 2018-02-27 -
- 2021-09-17 2021-09-17 -
Rättsinnehavare
Sophia Gessner
Uppladdad den
7 juni 2017
DOI
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Licens
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
Typ
Description | Question | Decode (Coded Value)
Datatyp
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])
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
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])
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
Longitudinal extensive transverse myelitis (LETM) (5)
CL Item
Unknown (6)
CL Item
Other Clinical Course (7)
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])
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)
CL Item
other (2)
Item
Methylprednisolone Therapy Scheme
text
C0025815 (UMLS CUI [1,1])
C0001555 (UMLS CUI [1,2])
C0001555 (UMLS CUI [1,2])
CL Item
3 x 1000 mg (3 x 1000 mg )
CL Item
5 x 1000 mg (5 x 1000 mg )
CL Item
3 x 2000 mg (3 x 2000 mg)
CL Item
5 x 2000 mg (5 x 2000 mg)
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])
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])
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
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
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)
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
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
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)
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])
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 of effectiveness (2)
C0235828 (UMLS CUI-1)
CL Item
Another reason (99)
C0205394 (UMLS CUI-1)
CL Item
Intolerance (3)
C1744706 (UMLS CUI-1)
CL Item
Lack of compliance (4)
C0457432 (UMLS CUI-1)
CL Item
Pregnancy (5)
C0032961 (UMLS CUI-1)
CL Item
Abnormal lab values (6)
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])
C0850893 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
MRI
Item
MRI done
boolean
C0024485 (UMLS CUI [1])
MRI Result available
Item
MRI Result available?
boolean
Date MRI Result
Item
Date MRI Result
date
MRI Image available
Item
MRI Image available?
boolean
Date MRI Image
Item
Date MRI Image:
date
Acute Activity
Item
Acute Activity of MS
boolean
CL Item
stable (stabil)
CL Item
Progression (progress)
CL Item
unknown (nicht bekannt)
Other Medical Information
Item
Other Medical Information
text