North-Western register of patients with inflammatory bowel diseases: achievements and lessons learned

Abstract

The problem of inflammatory bowel disease (IBD) — ulcerative colitis (UC) and Crohn's disease (CD) has not lost its urgency for several decades. Patients with IBD require long-term, continuous, often lifelong therapy and follow-up. This paper presents the data of patients’ register, worked outin Mechnikov North-Western State Medical University, in the Centre of IBD treatment. As per the Register, an average time of diagnosis was 2.6 years (30.7 months) — for CD and 1.1 year (12.7 months) — for UC. At the same time, only 36.9% of CD patients versus 72% of UC patients were diagnosed within the first year, with the peak incidence at the age between 18 and 30 years. Extra-intestinal manifestations are marked in 43.5% of CD patients and in 23.2% of UC patients. Besides, a quarter of them have more than one extra-intestinal symptoms, with bone and joint involvement domination (in 29.2% of CD patients and 18.4% of UC patients). Epidemiological registers, including IBD registers, form an important database on the incidence, characteristics, regional distribution, and nature of the disease development, which helps to navigate the profile of patients, investigate possible causes and determine risk factors affecting its course. However, the unified Federal Register will allow us to get a complete picture of patients with IBD in the country. In addition, maintaining a national register and pharmaco-economical evaluation of various treatment methods will, in our opinion, optimize treatment costs; ensure rational planning and use of budgetary funds.