Patients

If you were born with an anorectal malformation or a malformation of the exstrophy-epispadias-complex, please contact us. We look forward to hearing from you! We appreciate your participation and you will be compensated.

Please contact our coordination team in Bonn.

Physicians

If you are an attending physician with patients with the described malformations, you can help your patients and the research in this area by:

  1. Registering newborns up to the age of 6th months or rather before the reconstruction.
  1. Informing patients about this project.

We compensate your work with a financial allowance and fair participation in publication. We look forward to cooperation with regard to consents. Further associated research projects are also welcome. Please contact us if you have any questions, or keep informed with our newsletter!

Study

CURE-Net is a research project that comprises several aspects as follows. It is possible to participate in all aspects of the project, or, if you prefer, only in the specific areas that interest you. For example, you may opt out of the genetic or psychology portions of the study, but participate in the medical aspects. For this, we ask you for consents that are separated in these three aspects and each time revocable. Please contact us!

  1. Registration of all occurring cases with uro-rectal malformation (including anal atresia, anorectal malformation, cloacal malformation, epispadias, bladder exstrophy, exstrophy of the cloaca) in Germany. Patients born in 2009 or later are especially helpful. We support affected persons with a follow-up pass and comprehensive information about the malformation in benefit with self-help.
  1. Cross-sectional study of all participants collecting standardized information on diagnoses and treatment, separated for anoractal malformations and the exstrophy-epispadias-complex.
  1. Causal research concerning environmental factors or genetic factors.
  1. Basic research with the aid of animal models.
  1. Evaluation of psychosocial stress and quality of life in affected persons.