Competence Network Congenital Heart Defects

Congenital defects of the heart are the commonest type of congenital defect in humans. Each year, around 6,000 children in Germany are born with a heart defect. Congenital heart defects – i.e. malformations of the heart or the great vessels – come in many different forms, ranging from simple defects which hardly affect the cardiovascular system at all, to very serious heart diseases that can be fatal if left untreated.

Thanks to progress in paediatric cardiology, heart surgery and anaesthetics, over 90 percent of patients today reach adulthood. However, in most cases, the patients remain chronically ill for the rest of their lives.

Doctors, scientists, parents’ associations and self-help groups work together in the Competence Network to ensure a swift two-way transfer of knowledge between the research community and the healthcare sector. The research network unifies basic medical research, clinical research and public health care in the field of congenital heart defects in an interdisciplinary approach.

The National Registry for Congenital Heart Defects is the central project activity of the Competence Network. It collects patients’ data concerning the course of disease, life expectancy, quality of life, health care situation as well as biomaterial. The patient database provides a basis for epidemiological and genetic studies, which are lacking on an international scale. The official patron of the Competence Network for Congenital Heart Defects is Friede Springer. 

> Research Network Congenital Heart Defects

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