[The German research network CURE-Net : A benefit for patients with rare diseases]

Urologe A. 2017 Jul;56(7):905-909. doi: 10.1007/s00120-017-0403-7.
[Article in German]

Abstract

With the help of the media, there is growing public awareness for the problems associated with rare diseases and their impact on the lives of those affected and their families. Bladder exstrophy-epispadias complex (BEEC) is also a part of the group of rare diseases within the urological field. The German network CURE-Net was founded in 2009 to systematically collect data regarding the epidemiological and molecular causes, and clinical and psychosocial effects of congenital urorectal malformations. With the help of self-help groups a national registry could be established for systematic data retrieval. This research can help to improve existing medical care and follow-up for affected individuals with BEEC.

Keywords: Anorectal malformation; Bladder exstrophy-epsipadias complex; Malformations, urorectal; Network/CURE-net.

Publication types

  • Review

MeSH terms

  • Anorectal Malformations / genetics
  • Anorectal Malformations / therapy*
  • Biomedical Research*
  • Bladder Exstrophy / genetics
  • Bladder Exstrophy / therapy*
  • Epispadias / genetics
  • Epispadias / therapy*
  • Germany
  • Health Education
  • Humans
  • Public Health
  • Rare Diseases*
  • Registries
  • Self-Help Groups

Supplementary concepts

  • Bladder Exstrophy and Epispadias Complex