Establishment of a Population–based Registry of Inflammatory Bowel Diseases in Fars Province, Iran

BACKGROUND Inflammatory bowel diseases (IBD) are debilitating diseases that lead to a variety of problems in a patient’s daily life and are a huge burden for the health care system. Since this group of diseases are multifactorial and complex, long-term longitudinal studies are clearly needed to understand them better. A population–based registry (IBD-FaR) has been established in Fars, a southern Iranian province, with the intent to create a reliable data source. This registry will be of considerable help in future planning of health care resources necessary to deal with IBD and to enable investigators to test their theories on the origin and/or treatment of IBD. METHODS This registry is managed by both the Gastroenterohepatology Research Center and Health Policy Research Center at Shiraz University of Medical Sciences. A governing committee is responsible for decisions regarding budget allocations and use of data. The designed questionnaire includes a consent form, basic history data, risk factors, related procedures, medical therapy, and follow-up data. The establishment process has two parallel phases: in the first phase, data is collected from numerous sources, including annual hospital discharge data, referral from university affiliated physicians and private practices, pathologic reports, death certificates, self-referral, and insurance system data. In the interview, the questionnaire is completed and blood samples are taken. The gathered data are entered in a custom-designed, computerized data base. In the second phase, annual follow up interviews will be conducted. New IBD patients are also being registered. This phase will continue indefinitely, in order to include new incident cases. RESULTS Briefly, from May 2011 until December 2011, there were 188 patients [94 (50%) females and 94 (50%) males] diagnosed with IBD who were registered in IBD-FaR. Patients’ age range was between 15 and 80 years. A total of 164 (87.2%) patients out of 188 were registered as diagnosed with ulcerative colitis (UC) and 23 (12.2%) were registered as having Crohn’s disease (CD). Most patients 164 (87.2%) had negative family histories of IBD. CONCLUSION By retrospective and prospective data collection methods, this central database of IBD cases can determine the incidence, prevalence, and demographic characters of IBD in a defined population. It can facilitate future research to identify etiology, disease process, new treatment options, factors affecting prognosis, recurrences, optimal health care, morbidity and mortality of IBD, and at last but not least, provide educational and social support for patients by educational materials and organizing nongovermental organizations (NGOs).