Inflammatory Bowel Disease Registry and Monitoring: Feasibility Study and Application (Isfahan Inflammatory Bowel Disease Surveillance Project)

Inflammatory bowel disease (IBD) incidence has been increased in Iran as a developingcountry. Surveillance is a standard method for accessing valid data about disease epidemiology tomake relevant decisions for disease control, prevention, and management. We designed IsfahanIBD Surveillance Project (IISP) to make a surveillance system in this area.

The projectis designed in 3 phases. At the first phase, a model of step‑wise approach (core, expanded core, andoptional variables) for IBD surveillance was designed and implemented among IBD patients registeredat a major referral gastrointestinal diseases clinic in Isfahan. Data bank program and its softwarewere designed with suitable and multifunctional features. A total of 352 IBD cases were registered todata bank and analyzed as a pilot study of IISP.

A total of 352 IBD patients, including 245ulcerative colitis (UC), 80 Crohn’s disease (CD), and 27 indeterminate colitis, were registered to thedata bank. Bloody stool and abdominal cramp were the most common presentation symptom amongUC and CD, respectively. Extensive pancolitis was the most prevalent phenotype (40%) of UC. Overtwo‑thirds of our IBD patients were in remission states. Biologic agents had been prescribed in about10% of patients during disease. Primary sclerosing cholangitis was detected in about 7% and 10% ofCD and UC patients, respectively.

Valid data from a standard surveillance system area relevant, trustworthy tool for making decision by health policy‑makers. Integrated comprehensiveinterventional programs for disease control and management is the second phase of IISP.