ID

19067

Description

Multiple Sclerosis Core Data Set First Draft

Keywords

Versions (3)
  1. 9/12/16 9/12/16 -
  2. 9/29/16 9/29/16 -
  3. 12/2/16 12/2/16 -
Copyright Holder

Sophia Gessner

Uploaded on

December 2, 2016

DOI

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License

Creative Commons BY-NC 3.0
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Multiple Sclerosis Core Data Set

German English

Multiple Sclerosis Core Data Set

1 forms  
Diagnosis Multiple Sclerosis
Description

Diagnosis Multiple Sclerosis

Current flare?
Description

Current flare

Data type

boolean

Alias
UMLS CUI [1,1]
C0856120
UMLS CUI [1,2]
C0521116
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
UMLS CUI [1,3]
C0026769
Date of onset
Description

Date of Onset MS

Data type

date

Alias
UMLS CUI [1,1]
C0574845
UMLS CUI [1,2]
C0026769
Date of diagnosis
Description

Date of Diagnosis MS

Data type

date

Alias
UMLS CUI [1,1]
C2316983
UMLS CUI [1,2]
C0026769
EDSS
Description

EDSS

Today's EDSS
Description

Current EDSS

Data type

float

Alias
UMLS CUI [1]
C3830336
KFSS Pyramidal
Description

KFSS Pyramidal

Data type

integer

Alias
UMLS CUI [1]
C3829393
KFSS Sensory Functions
Description

KFSS Sensory

Data type

integer

Alias
UMLS CUI [1]
C3829391
KFSS Cerebral
Description

KFSS Cerebral

Data type

integer

Alias
UMLS CUI [1]
C3829397
KFSS Cerebellar Functions
Description

KFSS Cerebellar

Data type

integer

Alias
UMLS CUI [1]
C3829398
KFSS Bowel and Bladder Functions
Description

KFSS Bowel and Bladder

Data type

integer

Alias
UMLS CUI [1]
C3829400
KFSS Ambulation Score
Description

KFSS Ambulation

Data type

integer

Alias
UMLS CUI [1,1]
C3829396
UMLS CUI [1,2]
C0559964
KFSS Brain Stem Functions
Description

KFSS Brain Stem

Data type

integer

Alias
UMLS CUI [1]
C3829399
KFSS Visual (or Optic) Functions
Description

KFSS Visual

Data type

integer

Alias
UMLS CUI [1]
C3827261
Current MS therapy
Description

Current MS therapy

Active ingredient in current therapy
Description

Current Agent

Data type

integer

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 reasion 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
MRI Multiple Sclerosis
Description

MRI Multiple Sclerosis

MRI available?
Description

MRI

Data type

boolean

Alias
UMLS CUI [1]
C0024485
Amount of T2 lesions
Description

MRI T2 Lesion

Data type

integer

Alias
UMLS CUI [1,1]
C0412676
UMLS CUI [1,2]
C0221198
UMLS CUI [1,3]
C0026769
T1 lesions?
Description

MRI T1 Lesions

Data type

boolean

Alias
UMLS CUI [1,1]
C2029669
UMLS CUI [1,2]
C0221198
UMLS CUI [1,3]
C0026769
Gadolinium-enhancing lesions?
Description

Gd Enhancing

Data type

boolean

Alias
UMLS CUI [1]
C1333400
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Similar models

Multiple Sclerosis Core Data Set

1 forms
Name
Type
Description | Question | Decode (Coded Value)
Data type
Alias
Item Group
Diagnosis Multiple Sclerosis
Current flare
Item
Current flare?
boolean
C0856120 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
Item
Clinical Course of multiple sclerosis
integer
C0449259 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
mslauf
Code List
Clinical Course of multiple sclerosis
CL Item
not clearly attributable (-1)
CL Item
Clinically isolated syndrome (CIS) (1)
C2350037 (UMLS CUI-1)
CL Item
Relapsing-remitting MS (RRMS) (2)
C0751967 (UMLS CUI-1)
CL Item
Secondary progressive MS (SPMS) (3)
C0751965 (UMLS CUI-1)
CL Item
Primary progressive MS (PPMS) (4)
C0751964 (UMLS CUI-1)
CL Item
Others (5)
Other Clinical Course MS
Item
Other clinical course?
text
C0449259 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
Date of Onset MS
Item
Date of onset
date
C0574845 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
Date of Diagnosis MS
Item
Date of diagnosis
date
C2316983 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
Item Group
EDSS
Current EDSS
Item
Today's EDSS
float
C3830336 (UMLS CUI [1])
KFSS Pyramidal
Item
KFSS Pyramidal
integer
C3829393 (UMLS CUI [1])
KFSS Sensory
Item
KFSS Sensory Functions
integer
C3829391 (UMLS CUI [1])
KFSS Cerebral
Item
KFSS Cerebral
integer
C3829397 (UMLS CUI [1])
KFSS Cerebellar
Item
KFSS Cerebellar Functions
integer
C3829398 (UMLS CUI [1])
KFSS Bowel and Bladder
Item
KFSS Bowel and Bladder Functions
integer
C3829400 (UMLS CUI [1])
KFSS Ambulation
Item
KFSS Ambulation Score
integer
C3829396 (UMLS CUI [1,1])
C0559964 (UMLS CUI [1,2])
KFSS Brain Stem
Item
KFSS Brain Stem Functions
integer
C3829399 (UMLS CUI [1])
KFSS Visual
Item
KFSS Visual (or Optic) Functions
integer
C3827261 (UMLS CUI [1])
Item Group
Current MS therapy
Item
Active ingredient in current therapy
integer
C2827774 (UMLS CUI [1,1])
C0026769 (UMLS CUI [1,2])
curth1
Code List
Active ingredient in current therapy
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)
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)
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 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
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)
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)
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])
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 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])
MRI
Item
MRI available?
boolean
C0024485 (UMLS CUI [1])
Item
Amount of T2 lesions
integer
C0412676 (UMLS CUI [1,1])
C0221198 (UMLS CUI [1,2])
C0026769 (UMLS CUI [1,3])
MRI T2 Lesion
Code List
Amount of T2 lesions
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])
Gd Enhancing
Item
Gadolinium-enhancing lesions?
boolean
C1333400 (UMLS CUI [1])
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