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42834

Descrizione

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.

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Sophia Gessner

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17 settembre 2021

DOI

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    Neuroinflammatory demyelinating diseases CNS Common Data Elements

    Tedesco Inglese

    Neuroinflammatory demyelinating diseases CNS Common Data Elements

    1 moduli  
    Diagnosis demyelinating disease of central nervous system
    Descrizione

    Diagnosis demyelinating disease of central nervous system

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

    Current diagnosis

    Tipo di dati

    text

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

    Other CNS demyelinating disorder

    Tipo di dati

    text

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

    (dd/mm/yyyy)

    Tipo di dati

    date

    Alias
    UMLS CUI [1]
    C0574845
    Date of diagnosis
    Descrizione

    (dd/mm/yyyy)

    Tipo di dati

    date

    Alias
    UMLS CUI [1]
    C2316983
    Multiple sclerosis
    Descrizione

    Multiple sclerosis

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

    Clinical Course MS

    Tipo di dati

    text

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

    Other clinical course MS

    Tipo di dati

    text

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

    Neuromyelitis optica spectrum disorder (NMOSD)

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

    Clinical course NMOSD

    Tipo di dati

    text

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

    Other clinical course NMOSD

    Tipo di dati

    text

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

    Aquaporin-4 antibody

    Tipo di dati

    text

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

    anti-MOG antibody

    Tipo di dati

    text

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

    Acute disseminated encephalomyelitis (ADEM)

    Alias
    UMLS CUI-1
    C0014059
    Clinical course of ADEM
    Descrizione

    Clinical course ADEM

    Tipo di dati

    text

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

    Other clinical course ADEM

    Tipo di dati

    text

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

    Cerebrospinal fluid analysis

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

    CSF Analysis

    Tipo di dati

    text

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

    CSF finding: Oligoclonal bands

    Tipo di dati

    text

    Alias
    UMLS CUI [1]
    C0201942
    Pleocytosis
    Descrizione

    CSF finding: pleocytosis

    Tipo di dati

    text

    Alias
    UMLS CUI [1]
    C1849424
    Current relapse
    Descrizione

    Current relapse

    Alias
    UMLS CUI-1
    C0035020
    Current relapse?
    Descrizione

    Current relapse

    Tipo di dati

    boolean

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

    Relapse Therapy

    Tipo di dati

    text

    Alias
    UMLS CUI [1]
    C0679868
    Methylprednisolone regimen
    Descrizione

    Methylprednisolone regimen

    Tipo di dati

    text

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

    Other Therapy relapse

    Tipo di dati

    text

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

    Start Date Current Relapse Therapy

    Tipo di dati

    date

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

    Previous relapses

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

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

    Tipo di dati

    text

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

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

    Tipo di dati

    text

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

    Expanded Disability Status Scale (EDSS)

    Alias
    UMLS CUI-1
    C3830336
    Current EDSS
    Descrizione

    (at discharge/outpatient contact)

    Tipo di dati

    text

    Alias
    UMLS CUI [1]
    C3830336
    Current therapy
    Descrizione

    Current therapy

    Alias
    UMLS CUI-1
    C2827774
    Current therapy
    Descrizione

    Current therapy

    Tipo di dati

    text

    Alias
    UMLS CUI [1]
    C2827774
    Other current therapy
    Descrizione

    Please indicate other current therapy

    Tipo di dati

    text

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

    Reason No Therapy

    Tipo di dati

    text

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

    Other Reason No Therapy

    Tipo di dati

    text

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

    (dd/mm/yyyy)

    Tipo di dati

    date

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

    Risk stratification Natalizumab

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

    Previous immunosuppressive therapy

    Tipo di dati

    boolean

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

    Duration therapy Natalizumab

    Tipo di dati

    text

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

    Anti-JCV antibody measurement

    Tipo di dati

    text

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

    (dd/mm/yyyy)

    Tipo di dati

    date

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

    Anti-JCV antibody index

    Tipo di dati

    text

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

    L-selectine risk status

    Tipo di dati

    text

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

    (dd/mm/yyyy)

    Tipo di dati

    date

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

    Previous disease-modifying medication

    Alias
    UMLS CUI-1
    C2114510
    Previous therapy
    Descrizione

    Previous Therapy

    Tipo di dati

    text

    Alias
    UMLS CUI [1]
    C2114510
    Other previous therapy
    Descrizione

    Please indicate other previous therapy

    Tipo di dati

    text

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

    (dd/mm/yyyy)

    Tipo di dati

    date

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

    (dd/mm/yyyy)

    Tipo di dati

    date

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

    Reason Stop Therapy

    Tipo di dati

    text

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

    Other Reason Stop Therapy

    Tipo di dati

    text

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

    MRI results

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

    MRI

    Tipo di dati

    boolean

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

    MRI

    Tipo di dati

    text

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

    Acute activity

    Tipo di dati

    boolean

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

    Comparison previous MRI

    Tipo di dati

    text

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

    Other medical information

    Alias
    UMLS CUI-1
    C2598196
    Other medical information
    Descrizione

    Other medical information

    Tipo di dati

    text

    Alias
    UMLS CUI [1]
    C2598196
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    Similar models

    Neuroinflammatory demyelinating diseases CNS Common Data Elements

    1 moduli
    Name
    genere
    Description | Question | Decode (Coded Value)
    Tipo di dati
    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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