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ID

40535

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 clinically reported Treatment variables to be administered annually. 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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Versions (2)
  1. 9/4/18 9/4/18 - Sarah Riepenhausen
  2. 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

    Annual Clinical Form: Treatment variables

    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
    Treatment Variables
    Description

    Treatment Variables

    Alias
    UMLS CUI-1
    C0087111 (Therapeutic procedure)
    SNOMED
    277132007
    LOINC
    LP21090-3
    Indicate if the patient received medical therapy during the last 12 months
    Description

    INCLUSION CRITERIA: All patients TIMING: Annually REPORTING SOURCE: Clinical TYPE: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0418981 (Medical therapy)
    SNOMED
    243121000
    UMLS CUI [1,2]
    C4086728 (Past Year)
    Indicate if the patient received behavioral therapy during the last 12 months
    Description

    INCLUSION CRITERIA: All patients TIMING: Annually REPORTING SOURCE: Clinical TYPE: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0004933 (Behavior Therapy)
    SNOMED
    166001
    UMLS CUI [1,2]
    C4086728 (Past Year)
    Indicate if the patient received exercise-based therapy during the last 12 months
    Description

    INCLUSION CRITERIA: All patients TIMING: Annually REPORTING SOURCE: Clinical TYPE: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C2243091 (regular exercise (therapy))
    UMLS CUI [1,2]
    C4086728 (Past Year)
    Indicate if the patient received deep brain stimulation during the last 12 months
    Description

    INCLUSION CRITERIA: All patients TIMING: Annually REPORTING SOURCE: Clinical TYPE: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0394162 (Deep Brain Stimulation)
    SNOMED
    230861003
    UMLS CUI [1,2]
    C4086728 (Past Year)
    Indicate if the patient received infusion/injection based delivery therapy during the last 12 months
    Description

    INCLUSION CRITERIA: All patients TIMING: Annually REPORTING SOURCE: Clinical TYPE: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0574032 (Infusion procedures)
    SNOMED
    447826007
    LOINC
    LP263434-5
    UMLS CUI [1,2]
    C0087111 (Therapeutic procedure)
    SNOMED
    277132007
    LOINC
    LP21090-3
    UMLS CUI [1,3]
    C4086728 (Past Year)
    UMLS CUI [2,1]
    C1533685 (Injection procedure)
    SNOMED
    59108006
    LOINC
    LP35021-2
    UMLS CUI [2,2]
    C0087111 (Therapeutic procedure)
    SNOMED
    277132007
    LOINC
    LP21090-3
    UMLS CUI [2,3]
    C4086728 (Past Year)
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    Similar models

    Annual Clinical Form: Treatment variables

    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
    Treatment Variables
    C0087111 (UMLS CUI-1)
    Item
    Indicate if the patient received medical therapy during the last 12 months
    integer
    C0418981 (UMLS CUI [1,1])
    C4086728 (UMLS CUI [1,2])
    Treatments received over the last 12 months: Medical therapy
    Code List
    Indicate if the patient received medical therapy during the last 12 months
    CL Item
    No (0)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    Item
    Indicate if the patient received behavioral therapy during the last 12 months
    integer
    C0004933 (UMLS CUI [1,1])
    C4086728 (UMLS CUI [1,2])
    Treatments received over the last 12 months: Medical therapy
    Code List
    Indicate if the patient received behavioral therapy during the last 12 months
    CL Item
    No (0)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    Item
    Indicate if the patient received exercise-based therapy during the last 12 months
    integer
    C2243091 (UMLS CUI [1,1])
    C4086728 (UMLS CUI [1,2])
    Treatments received over the last 12 months: Medical therapy
    Code List
    Indicate if the patient received exercise-based therapy during the last 12 months
    CL Item
    No (0)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    Item
    Indicate if the patient received deep brain stimulation during the last 12 months
    integer
    C0394162 (UMLS CUI [1,1])
    C4086728 (UMLS CUI [1,2])
    Treatments received over the last 12 months: Medical therapy
    Code List
    Indicate if the patient received deep brain stimulation during the last 12 months
    CL Item
    No (0)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    Item
    Indicate if the patient received infusion/injection based delivery therapy during the last 12 months
    integer
    C0574032 (UMLS CUI [1,1])
    C0087111 (UMLS CUI [1,2])
    C4086728 (UMLS CUI [1,3])
    C1533685 (UMLS CUI [2,1])
    C0087111 (UMLS CUI [2,2])
    C4086728 (UMLS CUI [2,3])
    Treatments received over the last 12 months: Medical therapy
    Code List
    Indicate if the patient received infusion/injection based delivery therapy during the last 12 months
    CL Item
    No (0)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1705108 (UMLS CUI-1)
    (Comment:en)
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