Competence Network

Networked research in the Competence Network for Congenital Heart Defects: added value for patients and scientists

Each year in Germany, about 6,000 children are born with a heart defect. In total, there are currently between 200,000 and 300,000 young children, adolescents and adults living with this disease in Germany. These patients are often chronically ill and require special medical care. Physicians and researchers working for the Competence Network for Congenital Heart Defects are making efforts to remedy the lack of research and healthcare options for patients suffering from this syndrome.

This collaborative effort involves hospitals, heart centres, rehabilitation centres and practising physicians. Together, they have built up an interdisciplinary research structure which, for the first time, offers the possibility of conducting multi-centric studies on congenital heart defects. This efficient approach results in high-quality research findings and, in the longer term, improved patient care. “We are creating an efficient research structure for congenital heart defects that benefits patients, industry and government, and which gives long-term strength to Germany’s reputation as a place of research”, states Professor Lange, past chairman of the competence network.

The Competence Network for Congenital Heart Defects was registered as a scientific association in 2009 and thus fulfils the requirements for independent and sustainable research. It was established by the country’s three main scientific cardiology societies: the German Society for Paediatric Cardiology (DGPK), the German Cardiac Society (DGK), and the German Society for Thoracic and Cardiovascular Surgery (DGTHG).

The competence network is an associated partner of the German Center for Cardiovascular Disease (DZHK). Its patron is Friede Springer.

Setting up the competence network made it possible to create multi-faceted horizontal and vertical network structures which interconnect all the major players within the research community, general medical care practitioners, those affected by the condition and the general public.