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31559

Description

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 a form to be administered at the first visit to the doctor with Parkinson's disease. Mainly Patient-reported, some items may alternatively have a clinical reporting source. 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

Keywords

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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September 4, 2018

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Creative Commons BY-NC 3.0
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    ICHOM Parkinson's Disease

    English

    First Doctor's Visit Form

    1 forms  
    Patient ID
    Description

    Patient ID

    Alias
    UMLS CUI-1
    C1269815
    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
    Demographic factors
    Description

    Demographic factors

    Alias
    UMLS CUI-1
    C1704791
    What is your date of birth?
    Description

    INCLUSION CRITERIA: All patients TIMING: First doctor‘s visit REPORTING SOURCE: Clinical or patient-reported TYPE: Date by DD/MM/YYYY

    Data type

    date

    Measurement units
    • DD/MM/YYYY
    Alias
    UMLS CUI [1]
    C0001779
    UMLS CUI [2]
    C0421451
    DD/MM/YYYY
    Please indicate your sex at birth
    Description

    INCLUSION CRITERIA: All patients TIMING: First doctor‘s visit REPORTING SOURCE: Clinical or patient-reported TYPE: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1]
    C0079399
    Baseline clinical status
    Description

    Baseline clinical status

    Alias
    UMLS CUI-1
    C0449440
    UMLS CUI-2
    C1442488
    Did your doctor ever diagnose you with depression prior to your Parkinson's Disease diagnosis?
    Description

    INCLUSION CRITERIA: All patients TIMING: First doctor‘s visit REPORTING SOURCE: Patient-reported TYPE: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0011581
    UMLS CUI [1,2]
    C0332152
    UMLS CUI [1,3]
    C0030567
    Did your doctor ever diagnose you with anxiety prior to your Parkinson’s Disease diagnosis?
    Description

    INCLUSION CRITERIA: All patients TIMING: First doctor‘s visit REPORTING SOURCE: Patient-reported TYPE: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0003467
    UMLS CUI [1,2]
    C0332152
    UMLS CUI [1,3]
    C0030567
    Before you were diagnosed with Parkinson’s Disease, had you ever been told, or suspected yourself, that you seem to “act out your dreams” while asleep (for example, punching, flailing your arms in the air, making running movements etc.)?
    Description

    INCLUSION CRITERIA: All patients TIMING: First doctor‘s visit REPORTING SOURCE: Patient-reported TYPE: Single answer

    Data type

    integer

    Alias
    UMLS CUI [1,1]
    C0751772
    UMLS CUI [1,2]
    C0332152
    UMLS CUI [1,3]
    C0030567
    At what age was your Parkinson’s Disease diagnosed?
    Description

    INCLUSION CRITERIA: All patients TIMING: First doctor‘s visit REPORTING SOURCE: Patient-reported TYPE: Numerical RESPONSE OPTIONS: Numerical value of age in years

    Data type

    integer

    Measurement units
    • a
    Alias
    UMLS CUI [1,1]
    C1828181
    UMLS CUI [1,2]
    C0030567
    a
    At what age did your Parkinson’s Disease motor symptoms (e.g., rigidity, tremor, slowness of movement) start?
    Description

    INCLUSION CRITERIA: All patients TIMING: First doctor‘s visit REPORTING SOURCE: Patient-reported TYPE: Numerical RESPONSE OPTIONS: Numerical value of age in years

    Data type

    integer

    Measurement units
    • a
    Alias
    UMLS CUI [1,1]
    C0150907
    UMLS CUI [1,2]
    C0030567
    a
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    Similar models

    First Doctor's Visit Form

    1 forms
    Name
    Type
    Description | Question | Decode (Coded Value)
    Data type
    Alias
    Item Group
    Patient ID
    C1269815 (UMLS CUI-1)
    Patient ID
    Item
    Indicate the patient's medical record number
    integer
    C1269815 (UMLS CUI [1])
    Item Group
    Demographic factors
    C1704791 (UMLS CUI-1)
    Age
    Item
    What is your date of birth?
    date
    C0001779 (UMLS CUI [1])
    C0421451 (UMLS CUI [2])
    Item
    Please indicate your sex at birth
    integer
    C0079399 (UMLS CUI [1])
    Sex
    Code List
    Please indicate your sex at birth
    CL Item
    Male (1)
    C0086582 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Female (2)
    C0086287 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Undisclosed (999)
    C0439673 (UMLS CUI-1)
    (Comment:en)
    Item Group
    Baseline clinical status
    C0449440 (UMLS CUI-1)
    C1442488 (UMLS CUI-2)
    Item
    Did your doctor ever diagnose you with depression prior to your Parkinson's Disease diagnosis?
    integer
    C0011581 (UMLS CUI [1,1])
    C0332152 (UMLS CUI [1,2])
    C0030567 (UMLS CUI [1,3])
    Depression before PD diagnosis
    Code List
    Did your doctor ever diagnose you with depression prior to your Parkinson's Disease diagnosis?
    CL Item
    No (0)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    Item
    Did your doctor ever diagnose you with anxiety prior to your Parkinson’s Disease diagnosis?
    integer
    C0003467 (UMLS CUI [1,1])
    C0332152 (UMLS CUI [1,2])
    C0030567 (UMLS CUI [1,3])
    Depression before PD diagnosis
    Code List
    Did your doctor ever diagnose you with anxiety prior to your Parkinson’s Disease diagnosis?
    CL Item
    No (0)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    Item
    Before you were diagnosed with Parkinson’s Disease, had you ever been told, or suspected yourself, that you seem to “act out your dreams” while asleep (for example, punching, flailing your arms in the air, making running movements etc.)?
    integer
    C0751772 (UMLS CUI [1,1])
    C0332152 (UMLS CUI [1,2])
    C0030567 (UMLS CUI [1,3])
    Depression before PD diagnosis
    Code List
    Before you were diagnosed with Parkinson’s Disease, had you ever been told, or suspected yourself, that you seem to “act out your dreams” while asleep (for example, punching, flailing your arms in the air, making running movements etc.)?
    CL Item
    No (0)
    C1298908 (UMLS CUI-1)
    (Comment:en)
    CL Item
    Yes (1)
    C1705108 (UMLS CUI-1)
    (Comment:en)
    Age at PD diagnosis
    Item
    At what age was your Parkinson’s Disease diagnosed?
    integer
    C1828181 (UMLS CUI [1,1])
    C0030567 (UMLS CUI [1,2])
    Age at PD onset
    Item
    At what age did your Parkinson’s Disease motor symptoms (e.g., rigidity, tremor, slowness of movement) start?
    integer
    C0150907 (UMLS CUI [1,1])
    C0030567 (UMLS CUI [1,2])
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