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ID

40537

Description

PARKINSON‘S DISEASE DATA COLLECTION Version 2.2.1 Revised April 10th, 2017 www.ichom.org Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. 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. Surveys 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 supported for this standard set by the International Association for Parkinsonism and Related Disorders. Publication: 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. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

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www.ichom.org

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Versions (3)
  1. 9/4/18 9/4/18 - Sarah Riepenhausen
  2. 9/4/18 9/4/18 - Sarah Riepenhausen
  3. 4/30/20 4/30/20 - Sarah Riepenhausen
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ICHOM

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April 30, 2020

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    ICHOM Parkinson's Disease

    English

    Baseline and annual Clinical Form

    1 forms  
    Administrative Data
    Description

    Administrative Data

    Alias
    UMLS CUI-1
    C1320722 (Administrative documentation)
    SNOMED
    405624007
    Indicate the patient's medical record number
    Description

    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

    Data type

    integer

    Alias
    UMLS CUI [1]
    C1269815 (Patient identification)
    SNOMED
    372039005
    Time Relative to Baseline (e.g. Baseline, 6 months follow-up, 1 year follow-up, ...)
    Description

    This Item does not exist in the original standard set, instead it is asked to do the following: 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. For example, VARIABLEID_BASE (baseline); VARIABLEID_6MO (6 month follow-up); VARIABLEID_1YR (1 year follow-up), etc.

    Data type

    text

    Alias
    UMLS CUI [1,1]
    C0439564 (Relative time)
    SNOMED
    118578006
    LOINC
    LP21276-8
    UMLS CUI [1,2]
    C1442488 (Baseline)
    LOINC
    LA16758-7
    Cognitive and psychiatric functioning
    Description

    Cognitive and psychiatric functioning

    Alias
    UMLS CUI-1
    C0392335 (Cognitive functions)
    SNOMED
    311465003
    UMLS CUI-2
    C0233402 (Psychiatric function, NOS)
    Non-motor aspects of experiences of daily living (MDS-UPDRS Part 1A) partial Score
    Description

    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)

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C3639714 (Movement Disorder Society Unified Parkinson's Disease Rating Scale Questionnaire)
    UMLS CUI [1,2]
    C0728938 (Partial)
    SNOMED
    255609007
    LOINC
    LA6660-0
    UMLS CUI [1,3]
    C0449820 (Score)
    SNOMED
    246262008
    LOINC
    MTHU024701
    UMLS CUI [2,1]
    C0001288 (Activities of Daily Living (activity))
    SNOMED
    129025006
    LOINC
    LP57620-4
    UMLS CUI [2,2]
    C1457887 (Symptoms)
    LOINC
    MTHU021540
    UMLS CUI [2,3]
    C0332300 (Except for)
    SNOMED
    5185003
    UMLS CUI [2,4]
    C0426980 (Motor symptoms)
    SNOMED
    267082004
    UMLS CUI [3]
    C0392335 (Cognitive functions)
    SNOMED
    311465003
    UMLS CUI [4]
    C0233402 (Psychiatric function, NOS)
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    Similar models

    Baseline and annual Clinical Form

    1 forms
    Name
    Type
    Description | Question | Decode (Coded Value)
    Data type
    Alias
    Item Group
    Administrative Data
    C1320722 (UMLS CUI-1)
    Patient ID
    Item
    Indicate the patient's medical record number
    integer
    C1269815 (UMLS CUI [1])
    Time Relative to Baseline
    Item
    Time Relative to Baseline (e.g. Baseline, 6 months follow-up, 1 year follow-up, ...)
    text
    C0439564 (UMLS CUI [1,1])
    C1442488 (UMLS CUI [1,2])
    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])
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