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ID

40550

Description

INFLAMMATORY ARTHRITIS DATA COLLECTION Version 1.0.0 Revised: April 27 th, 2018 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: Rheumatoid Arthritis | Psoriatic Arthritis | Ankylosing Spondylitis | Juvenile Idiopathic Arthritis This ODM-file contains Clinical Variables to be administered at baseline visit and every 6 months if the disease is active or annually if the disease is in remission. The following scores are the ones that are integrated into the standard set. There are alternatives for each category: see questionnaire or data collection guide. PAIN: - Numerical Rating Scale (Adult/Paediatric) FATIGUE - Numerical rating Scale (Adult/Paediatric) ACTIVITY LIMITATION: - HAQ-II* (Adult): copyright FORWARD-The National Data Bank for Rheumatic Diseases, arthritis-research.org ; http://bit.ly/HAQIIIA ; Wolfe F, Michaud K, Pincus T. Development and validation of the health assessment questionnaire II: a revised version of the health assessment questionnaire. Arthritis & Rheumatism. 2004;50(10):3296-305. OVERALL EMOTIONAL AND PHYSICAL HEALTH IMPACT - Numerical rating scale (Adult/Paediatric) WORK/SCHOOL/HOUSEWORK ABILITY AND PRODUCTIVITY: - WPAI (Adult): reillyassociates.net/WPAI_General.html, they ask to inform them about publication or presentation of WPAI-data ICHOM was supported for the Inflammatory Arthritis Standard Set by Santeon, Arthritis Research UK, TiH Transparency in Healthcare, Maasstad Ziekenhuis, Karolinska Universitetssjukhuset, and Sheba Academic Medical Center Hospital. Publication: Oude Voshaar MAH, Das Gupta Z, Bijlsma JWJ, et al. International Consortium for Health Outcome Measurement Set of Outcomes That Matter to People Living With Inflammatory Arthritis: Consensus From an International Working Group. Arthritis Care Res (Hoboken). 2019;71(12):1556‐1565. doi:10.1002/acr.23799 For this version of the standard set, semantic annotation with UMLS CUIs has been added.

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www.ichom.org

Keywords

Versions (2)
  1. 9/21/18 9/21/18 - 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 Inflammatory Arthritis

    English

    Baseline and 6-monthly/annually Clinical Form

    1 forms  
    Administrative Data
    Description

    Administrative Data

    Alias
    UMLS CUI-1
    C1320722
    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 TYPE: Numerical RESPONSE OPTIONS: According to institution

    Data type

    integer

    Alias
    UMLS CUI [1]
    C1269815
    Time Relative to Baseline (e.g. 3 months follow-up, 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. In this case 6 months, 1, and 2 years should be done, 3 months and 5 years follow-up are recommended, but not essential.

    Data type

    text

    Alias
    UMLS CUI [1,1]
    C0439564
    UMLS CUI [1,2]
    C1442488
    Treatment-Specific
    Description

    Treatment-Specific

    Alias
    UMLS CUI-1
    C0087111
    Which validated and internationally-accepted composite score for inflammatory disease activity did you use?
    Description

    INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly if disease is active, baseline and annually if in remission REPORTING SOURCE: Clinical TYPE: Free Text

    Data type

    text

    Alias
    UMLS CUI [1,1]
    C4065474
    UMLS CUI [1,2]
    C1290884
    What was the clinical composite score?
    Description

    INCLUSION CRITERIA: All patients TIMING: Baseline and 6-monthly if disease is active, baseline and annually if in remission REPORTING SOURCE: Clinical TYPE: Free Text

    Data type

    text

    Alias
    UMLS CUI [1,1]
    C4065474
    UMLS CUI [1,2]
    C1290884
    UMLS CUI [1,3]
    C1274040
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    Similar models

    Baseline and 6-monthly/annually 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. 3 months follow-up, 6 months follow-up, 1 year follow-up, ...)
    text
    C0439564 (UMLS CUI [1,1])
    C1442488 (UMLS CUI [1,2])
    Item Group
    Treatment-Specific
    C0087111 (UMLS CUI-1)
    Inflammatory disease activity
    Item
    Which validated and internationally-accepted composite score for inflammatory disease activity did you use?
    text
    C4065474 (UMLS CUI [1,1])
    C1290884 (UMLS CUI [1,2])
    Inflammatory disease activity result
    Item
    What was the clinical composite score?
    text
    C4065474 (UMLS CUI [1,1])
    C1290884 (UMLS CUI [1,2])
    C1274040 (UMLS CUI [1,3])
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