Epidemiology and care structures for children and adolescents and young adults up to the 26th year of life with inflammatory bowel diseases (IBD) in Leipzig/Saxony/Germany

Valid data on the incidence of inflammatory bowel disease (IBD) in children and adolescents in Germany have not yet been published. Unpublished data of the Pediatric IBD Registry of Saxony (primary data source) have shown a decrease in age-specific incidence rates after the 14th year of age; therefore, a second data source was collected from adult gastroenterologists in Leipzig. All patients up to 25 years of age with a newly diagnosed IBD from adult gastroenterologists in Leipzig between 2005 and 2009 were included in the second data source: a total of 150 young patients with only two patients before age of 16 and 11 patients before age of 18 years. Using a second data source, the incidence of IBD in children and adolescents up to the completion of the 18th year, as determined by IBD Registry, was corrected from 6.6/100,000 (95%-CI 5.4-8.4) to an actual incidence of 11.0/100,000 (95%-CI 9.1-12.9). Age-specific incidence of IBD was also corrected, increasing continuously until the 18th year was completed. Nearly all patients up to 15 years (completeness 87.5%) were recorded by pediatricians to the IBD Registry. The actual incidence up to the age of 18 years for IBD in Leipzig is one of the highest worldwide. To obtain valid epidemiologic data up to the age of 18, the inclusion of adult gastroenterologists are necessary.