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ID

31682

Description

INFLAMMATORY ARTHRITIS DATA COLLECTION Version 1.0.0 Revised: April 27 th, 2018 www.ichom.org 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. 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. 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 by Santeon, Arthritis Research UK, TiH Transparency in Healthcare, Maasstad Ziekenhuis, Karolinska Universitetssjukhuset, Sheba Academic Medical Center Hospital

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www.ichom.org

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Versions (2)
  1. 21/09/2018 21/09/2018 - Sarah Riepenhausen
  2. 30/04/2020 30/04/2020 - Sarah Riepenhausen
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ICHOM

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21 septembre 2018

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Creative Commons BY-NC 3.0
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    ICHOM Inflammatory Arthritis

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    Baseline and 6-monthly/annually Clinical Form

    1 Formulaires  
    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 TYPE: Numerical RESPONSE OPTIONS: According to institution

    Type de données

    integer

    Alias
    UMLS CUI [1]
    C1269815 (Patient identification)
    SNOMED
    372039005
    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.

    Type de données

    text

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

    Treatment-Specific

    Alias
    UMLS CUI-1
    C0087111 (Therapeutic procedure)
    SNOMED
    277132007
    LOINC
    LP21090-3
    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

    Type de données

    text

    Alias
    UMLS CUI [1,1]
    C4065474 (disease activity index)
    UMLS CUI [1,2]
    C1290884 (Inflammatory disorder)
    SNOMED
    128139000
    LOINC
    LP128503-2
    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

    Type de données

    text

    Alias
    UMLS CUI [1,1]
    C4065474 (disease activity index)
    UMLS CUI [1,2]
    C1290884 (Inflammatory disorder)
    SNOMED
    128139000
    LOINC
    LP128503-2
    UMLS CUI [1,3]
    C1274040 (Result)
    SNOMED
    394617004
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    Similar models

    Baseline and 6-monthly/annually Clinical Form

    1 Formulaires
    Name
    Type
    Description | Question | Decode (Coded Value)
    Type de données
    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])
    Retour au début de la page 

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