Das Register für chronisch entzündliche Darmerkrankungen CEDATA-GPGE
D. Scholz, R. Behrens, M. Claßen
Kinder- und Jugendmedizin 2011; 11: 283–288, Schattauer 5/2011: 1-6
Patient registries as epidemiologic tools – the inflammatory bowel disease registry CEDATA-GPGE
Summary
With the incidence of inflammatory bowel disease (IBD), especially Crohn’s disease of childhood and adolescence, on the rise, science has focused attention on the characteristics of paediatric IBD. Longer periods of illness, pain, underweight and more impair the physical, emotional, and intellectual development. Paediatricians should be familiar with the natural course and complications of pediatric IBD in order to assist their patients in reaching their full potential. Patient registries have been set up in many western countries, but due to institutional constraints often cover only a part of the population. In 2000 the Saxonian Children-IBD-registry has been instituted, a state-wide documentation system for the course of IBD in pediatric patients. Building on this expertise in 2004 the German-Language Society of Paediatric Gastroenterology and Nutrition (GPGE) established the registry CEDATA that meanwhile included the largest cohort of children and adolescents with IBD worldwide.