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.

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