0 Beoordelingen
ID

40535

Beschrijving

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.

Link

www.ichom.org

Trefwoorden

Versies (2)
  1. 4/9/18 4/9/18 - Sarah Riepenhausen
  2. 30/4/20 30/4/20 - Sarah Riepenhausen
Houder van rechten

ICHOM

Geüploaded op

30 de abril de 2020

DOI

Voor een aanvraag inloggen.

Licentie

Creative Commons BY-NC 4.0
Model Commentaren :

Hier kunt u commentaar leveren op het model. U kunt de tekstballonnen bij de itemgroepen en items gebruiken om er specifiek commentaar op te geven.

Terug naar het model Commentaren
Itemgroep Commentaren voor :

Item Commentaren voor :

  • Nieuwste
  • Oudste
  • Populair
  • Nieuwste
    • Nieuwste
    • Oudste
    • Populair

    Geen commentaren

    U moet ingelogd zijn om formulieren te downloaden. AUB inloggen of schrijf u gratis in.

    ICHOM Parkinson's Disease

    Engels

    Annual Clinical Form: Treatment variables

    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
    Time Relative to Baseline (e.g. Baseline, 6 months follow-up, 1 year follow-up, ...)
    Beschrijving

    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.

    Datatype

    text

    Alias
    UMLS CUI [1,1]
    C0439564
    UMLS CUI [1,2]
    C1442488
    Treatment Variables
    Beschrijving

    Treatment Variables

    Alias
    UMLS CUI-1
    C0087111
    Indicate if the patient received medical therapy during the last 12 months
    Beschrijving

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

    Datatype

    integer

    Alias
    UMLS CUI [1,1]
    C0418981
    UMLS CUI [1,2]
    C4086728
    Indicate if the patient received behavioral therapy during the last 12 months
    Beschrijving

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

    Datatype

    integer

    Alias
    UMLS CUI [1,1]
    C0004933
    UMLS CUI [1,2]
    C4086728
    Indicate if the patient received exercise-based therapy during the last 12 months
    Beschrijving

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

    Datatype

    integer

    Alias
    UMLS CUI [1,1]
    C2243091
    UMLS CUI [1,2]
    C4086728
    Indicate if the patient received deep brain stimulation during the last 12 months
    Beschrijving

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

    Datatype

    integer

    Alias
    UMLS CUI [1,1]
    C0394162
    UMLS CUI [1,2]
    C4086728
    Indicate if the patient received infusion/injection based delivery therapy during the last 12 months
    Beschrijving

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

    Datatype

    integer

    Alias
    UMLS CUI [1,1]
    C0574032
    UMLS CUI [1,2]
    C0087111
    UMLS CUI [1,3]
    C4086728
    UMLS CUI [2,1]
    C1533685
    UMLS CUI [2,2]
    C0087111
    UMLS CUI [2,3]
    C4086728
    Terug naar het begin van de pagina

    Similar models

    Annual Clinical Form: Treatment variables

    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])
    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)
    Terug naar het begin van de pagina 

    Help

    Do you need help on how to use the search function? Please watch the corresponding tutorial video for more details and learn how to use the search function most efficiently.

    Watch Tutorial