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- 4/30/20 - 1 form, 3 itemgroups, 18 items, 1 language
Itemgroups: Administrative Data, Symptoms, function and quality of life, Survival and Disease Control
INFLAMMATORY BOWEL DISEASE DATA COLLECTION Version 1.0.1 Revised April 10th, 2017 Based mainly on the above version, additions/modifications August 2019 Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement ( The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. Conditions Covered: An adult (>16) with a diagnosis of Inflammatory Bowel Disease (IBD) including Crohn’s disease, ulcerative colitis and indeterminate colitis (or IBD unclassified) Treatment Approaches: Medical | Surgical | Supportive This ODM-file contains Patient reported Forms. Timepoints: Baseline, 6 months and anually. 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. Survey used: IBD-Control PROM : IBD-Control is made available to the IBD community without license or fees, but the authors retain copyright and request that the original paper is cited in any published output. For more details, see: Bodger et al. Development and validation of a rapid, generic measure of disease control from the patient’s perspective: the IBD-control questionnaire. Gut 2014;63(7):1092-102. Please note, only some questions of the IBD-Control questionnaire are asked, therefore a total score is not applicable or requested within this guide. ICHOM was supported for this standard set by Oxford Academic Health Science Network (partly funded by AbbVie). Kim AH, Roberts C, Feagan BG, et al. Developing a Standard Set of Patient-Centred Outcomes for Inflammatory Bowel Disease — an International, Cross-disciplinary Consensus. Journal of Crohn's and Colitis. 2017;1–11. doi:10.1093/ecco-jcc/jjx161 For this version of the standard set, semantic annotation with UMLS CUIs has been added.