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

Link

www.ichom.org

Keywords

Versions (2)
  1. 9/21/18 9/21/18 - Sarah Riepenhausen
  2. 4/30/20 4/30/20 - Sarah Riepenhausen
Copyright Holder

ICHOM

Uploaded on

September 21, 2018

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License

Creative Commons BY-NC 3.0
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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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