0 Beoordelingen
ID

31561

Beschrijving

PARKINSON‘S DISEASE DATA COLLECTION Version 2.2.1 Revised April 10th, 2017 www.ichom.org Conditions Covered: Idiopathic Parkinson’s Disease Treatment Approaches: Pharmacotherapy | Behavioral Therapy | Exercise-Based Therapy | Deep Brain Stimulation | Infusion/Injection-Based Delivery This ODM-file contains clinical variables to be administered at baseline and annually from then on. Please timestamp all variables. Some Standard Set variables are collected at multiple timepoints, and we will ask you to submit these variables in a concatenated VARIABLEID_TIMESTAMP form for future analyses. TEST StudyFor example, VARIABLEID_BASE (baseline); VARIABLEID_6MO (6 month follow-up); VARIABLEID_1YR (1 year follow-up), etc. Survey used: Movement Disorder Society (MDS-UPDRS), Part I: Non-Motor Aspects of Experiences of Daily Living (nM- EDL). Both clinical- and patient-reported portions; Part II: Motor Aspects of Experiences of Daily Living (M-EDL). Patient-reported: The MDS-UPDRS requires a license (by International Parkinson’s and Movement Disorders Society), therefore the used items are not integrated into this version of the Parkinson's Disease Standard Set. International Parkinson’s and Movement Disorders Society (IPMDS) Non-motor symptoms questionnaire (NMSQ): The NMSQ requires a license. However, in ICHOM's Parkinson's Disease Standard Set only one question derived from 2 NMSQ items is used. Parkinson’s Disease Quality of Life Questionnaire (PDQ-8): The PDQ-8 requires a license (by Innovation, Oxford University), therefore the used items are not integrated into this version of the Parkinson's Disease Standard Set. ICHOM was endorsed for this standard set by the International Association for Parkinsonism and Related Disorders. De Roos P, Bloem BR, Kelley TA, et al. A Consensus Set of Outcomes for Parkinson’s Disease from the International Consortium for Health Outcomes Measurement. Journal of Parkinson’s disease. 2017;7(3):533-543. doi:10.3233/JPD-161055.

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www.ichom.org

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Versies (3)
  1. 04-09-18 04-09-18 - Sarah Riepenhausen
  2. 04-09-18 04-09-18 - Sarah Riepenhausen
  3. 30-04-20 30-04-20 - Sarah Riepenhausen
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4 september 2018

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    ICHOM Parkinson's Disease

    Engels

    Baseline and annual Clinical Form

    1 Formulieren  
    Administrative Data
    Beschrijving

    Administrative Data

    Alias
    UMLS CUI-1
    C1320722
    Indicate the patient's medical record number
    Beschrijving

    This number will not be shared with ICHOM. In the case patient-level data is submitted to ICHOM for benchmarking or research purposes, a separate ICHOM Patient Identifier will be created and cross-linking between the ICHOM Patient Identifier and the medical record number will only be known at the treating institution INCLUSION CRITERIA: All patients TIMING: On all forms REPORTING SOURCE: Administrative or clinical RESPONSE OPTIONS: According to institution

    Datatype

    integer

    Alias
    UMLS CUI [1]
    C1269815
    Cognitive and psychiatric functioning
    Beschrijving

    Cognitive and psychiatric functioning

    Alias
    UMLS CUI-1
    C0392335
    UMLS CUI-2
    C0233402
    Non-motor aspects of experiences of daily living (MDS-UPDRS Part 1A) partial Score
    Beschrijving

    This item is a partial score of items of MDS-UPDRS about non-motor functioning (1.1-1.6). Due to the need for a license for use of the original scale, the items are not part of this version of the standard set. In the original standard set the item-IDs are from MDSUPDRS_Q01 to MDSUPDRS_Q06. INCLUSION CRITERIA: All patients TIMING: Baseline and annually REPORTING SOURCE: Clinical TYPE (original questions): Single answer (this version: numerical)

    Datatype

    integer

    Alias
    UMLS CUI [1,1]
    C3639714
    UMLS CUI [1,2]
    C0728938
    UMLS CUI [1,3]
    C0449820
    UMLS CUI [2,1]
    C0001288
    UMLS CUI [2,2]
    C1457887
    UMLS CUI [2,3]
    C0332300
    UMLS CUI [2,4]
    C0426980
    UMLS CUI [3]
    C0392335
    UMLS CUI [4]
    C0233402
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    Similar models

    Baseline and annual Clinical Form

    1 Formulieren
    Name
    Type
    Description | Question | Decode (Coded Value)
    Datatype
    Alias
    Item Group
    Administrative Data
    C1320722 (UMLS CUI-1)
    Patient ID
    Item
    Indicate the patient's medical record number
    integer
    C1269815 (UMLS CUI [1])
    Item Group
    Cognitive and psychiatric functioning
    C0392335 (UMLS CUI-1)
    C0233402 (UMLS CUI-2)
    Non-motor aspects of experiences of daily living (MDS-UPDRS Part 1A) partial Score
    Item
    Non-motor aspects of experiences of daily living (MDS-UPDRS Part 1A) partial Score
    integer
    C3639714 (UMLS CUI [1,1])
    C0728938 (UMLS CUI [1,2])
    C0449820 (UMLS CUI [1,3])
    C0001288 (UMLS CUI [2,1])
    C1457887 (UMLS CUI [2,2])
    C0332300 (UMLS CUI [2,3])
    C0426980 (UMLS CUI [2,4])
    C0392335 (UMLS CUI [3])
    C0233402 (UMLS CUI [4])
    Terug naar het begin van de pagina 

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