Research for Rare - Research for rare diseases

CURE-Net - Network for congenital urorectal Malformations

Congenital malformations arise by reason of embryonic aberration of the uro-rectal septum and pose an enormous challenge for patients and their families. Because continence is already affected at birth, lifelong physical and mental health outcomes are frequently affected by these malformations. Malformations of the uro-rectal septum include anorectal malformations (ARM) and the exstrophy-epispadias-complex (EEC). Their overall birth prevalence has been estimated to be 1:2500 live births, leading to approximately 280 affected newborns in Germany every year.

The Network for Congenital Uro-REctal malformations (CURE-Net) is a federal program for the research of these rare diseases funded by the German Federal Ministry of Education and Research. The aim is to use modern genetic and molecular biological research to understand the causes of uro-rectal malformations and to evaluate the postoperative treatment outcome and different aftercare procedures by multicenter, clinical and psychosocial research via standardized examination procedures prospectively and by a cross-sectional study.


Nicole Schwarzer
CURE-NET Koordination und Vertretung der Patienteninteressen SoMA e.V.
Weidmannstrannstr. 51, 80997 München

PD Dr. Heiko Reutter
CURE-Net Biobank am
Institut für Humangenetik
Universitätsklinikum Bonn
Sigmund-Freud Str. 25, 53127 Bonn

Dr. Ekkehart Jenetzky
Dipl. Psych. Markus Homberg (Register)
CURE-Net Register an der
Klinik und Poliklinik für Kinder- und Jugendpsychiatrie,
Universitätsmedizin Mainz
Langenbeckstr. 1
D-55131 Mainz
Tel: 06131 / 173878