Patientenregister als epidemiologische Werkzeuge

Zusammenfassung

Mit der Zunahme der Inzidenz chronisch entzündlicher Darmerkrankungen (CED), insbesondere des Morbus Crohn im Kindes- und Jugendalter, richtete sich die Aufmerksamkeit der Wissenschaft auf die Merkmale der pädiatrischen CED. V. a. längere Krankheitszeiten, Schmerzen und Untergewicht behindern die körperliche, seelische und schulische Entwick-lung. Kinder- und Jugendärzte sollten mit den Besonderheiten des Krankheitsverlaufs und den Komplikationen der CED in der Pädiatrie vertraut sein, um den Betroffenen zu helfen, ihr Entwicklungspotenzial voll auszuschöpfen. In westlichen Ländern entstanden Patientenregister, die aufgrund institutioneller Bindungen meist nur einen Teil der Population erfassen. Mit dem sächsischen Kinder-CED-Register wurde 2000 ein flächendeckendes Dokumentationssystem für den Verlauf der CED im Kindesalter etabliert. Auf dieser Erfahrung aufbauend wurde 2004 von der Gesellschaft für pädiatrische Gastroenterologie und Ernährung (GPGE) das deutschsprachige Register CEDATA ins Leben gerufen, das mittlerweile die weltweit größte Zahl von Kindern und Jugendlichen mit CED in einer Kohorte vereint.

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 CE-DATA that meanwhile included the largest cohort of children and adolescents with IBD worldwide.

Schlüsselwörter

Chronisch entzündliche Darmerkrankung - Patientenregister - Epidemiologie - Versorgungsqualität

Keywords

Inflammatory bowel disease - patient registry - epidemiology - quality of care

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