In Germany, about 350,000 patients suffer from inflammatory bowel disease (unofficial estimates of health insurance companies rather assume 440,000 affected persons (BARMER Report “Gesundheitswesen aktuell”, A. Stallmach et al. 2012)). Exact data on prevalence and incidence are not available in Germany. However, the incidence and prevalence of IBD are increasing worldwide, demonstrating the growing relevance of these diseases, also in terms of health economics.
(Molodecky, N.A.et al, ,,Increasing incidence and prevalence of the inflammatory bowel disease with time, based on systemic review” Gastroenterology 2012; 142 ( 1)).
In principle, inflammatory bowel diseases are excellent treatable with appropriate drugs, depending on activity and disease progression. In recent years, new, innovative and highly effective therapies (biologics / small molecules) have been introduced to the healthcare market. These new therapies require highly qualified medical expertise and a considerable amount of time for treatment.
Recent data show that especially the young patient group in the early or mid-life stages receives suboptimal treatment. On average, it still takes about two years from the onset of the first symptoms to the correct diagnosis. This can already lead to irreversible damage to the gastrointestinal tract.
Despite excellent data, a significant proportion of affected patients are still treated with steroids over a long period of time, immunosuppressive drugs are rarely used, as well as biologics. (Blumenstein, I. et al. “Health Care and Cost of Medication for Inflammatory Bowel Disease in the Rhein-Main Region, Germany: A Multicenter Prospective, Internet-based Study.” InflammBowel Dis 2008; 14(2)).
By early and consistent implementation of current treatment guidelines, patients could achieve a high level of well-being and possible long-term sequelae could be prevented. In addition, unnecessary costs for therapies, hospitalizations, and surgeries could be avoided. Finally, fewer incapacities to work and early retirements would relieve the national economy.
To achieve this, it is a prerequisite to establish and record standardized and practicable ways to improve patient care.
For this reason, the first independent, national IBD registry “CEDUR” (“Chronic Inflammatory Bowel Disease, an Independent Registry”) was established to enable improved health care research, e.g. by methodically collecting data on therapy effects, real treatment courses including costs, pharmacoeconomic costs and incidence / prevalence of IBD in Germany.