Intest Res.  2019 Jul;17(3):330-339. 10.5217/ir.2018.00157.

Iranian Registry of Crohn's and Colitis: study profile of first nation-wide inflammatory bowel disease registry in Middle East

• Malekzadeh MM
• Sima A
• Alatab S
• Sadeghi A
• Daryani NE
• Adibi P
• Maleki I
• Vossoughinia H
• Fakheri H
• Yazdanbod
• Taghavi SA
• Aghazadeh
• Somi MH
• Zendedel K
• Vahedi H
• Malekzadeh R

• KMID: 2454741
• DOI: http://doi.org/10.5217/ir.2018.00157

Abstract

BACKGROUND/AIMS
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.
METHODS
IRCC is a multicenter 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 α.
RESULTS
All sections of questionnaire had Cronbach's α of more than 0.6. In pilot study, 312 of participants (56.4%) were male and mean age was 38 years (standard deviation=12.8) and 378 patients (68.35%) had ulcerative colitis, 303 subjects (54,7%) had college education and 358 patients (64.74%) were of Fars ethnicity. We found that 68 (12.3%), 44 (7.9%), and 13 (2.3%) of participants were smokers, hookah and opium users, respectively. History of appendectomy was reported in 58 of patients (10.48%). The most common medication was 5-aminosalicylate (94.39%).
CONCLUSIONS
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.

Keyword

Inflammatory bowel disease; Registry; Iran

MeSH Terms

Administrative Personnel
Appendectomy
Colitis*
Colitis, Ulcerative
Consensus
Cooperative Behavior
Data Collection
Dataset
Education
Feasibility Studies
Humans
Incidence
Inflammatory Bowel Diseases*
Iran
Male
Mesalamine
Middle East*
Opium
Pilot Projects
Prevalence
Prospective Studies
Mesalamine
Opium

Figure

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  Fig. 1. The Iranian Registry of Crohn’s and Colitis organization. IT, information technology.

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  Fig. 2. Participation rate of gastroenterologists in different provinces of Iran with Iranian Registry of Crohn’s and Colitis study.

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  Fig. 3. Data collection pattern in Iranian Registry of Crohn’s and Colitis (IRCC).

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  Fig. 4. (A, B) The percentage of previous or current drug use for treatment of UC and CD in pilot study of the Iranian Registry of Crohn’s and Colitis. 5-ASA, 5-aminosalicylate.

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