A recent study revealed increasing incidence and prevalence of Inflammatory Bowel Disease (IBD) in Iran. The Iranian Registry of Crohn’s and Colitis (IRCC) was designed recently to answer the needs. We reported the design, methods of data collection, and aims of IRCC in this paper.

IRCC is a multi-center prospective registry, which is established with collaboration of more than 100 gastroenterologists from different provinces of Iran. Minimum data set for IRCC was defined according to an international consensus on standard set of outcomes for IBD. A pilot feasibility study was performed on 553 IBD patients with a web-based questionnaire. The reliability of questionnaire evaluated by Cronbach’s alpha.

Most section of questionnaire had Cronbach’s α of more than 0.6. In pilot study, 312 (56.4%) of participants were male and mean age was 38 years (Standard Deviation=12.8) and 378 (68.35%) patients had ulcerative colitis, 303 (54,7%) subjects had college education and 358 (64.74%) patients were of Fars ethnicity. We found that 68 (12.3%), 44 (7.9%), 13 (2.3%) of participants were smokers, hookah and opium users, respectively. History of appendectomy was reported in 58 (10.48%) of patients. The most common medication was 5-Aminosalicylate (94.39%).

To the best of our knowledge, IRCC is the first national IBD registry in the Middle East and could become a reliable infrastructure for national and international research on IBD. IRCC will improve the quality of care of IBD patients and provide national information for policy makers to better plan for controlling IBD in Iran.