At the Competence Network for Congenital Heart Defects, cardiac and surgical societies, patient associations, hospitals, institutes and research facilities work together. More than 30 universities, heart centers and research facilities, as well as pediatric cardiologists, cardiologists and rehabilitation physicians in private practice, are members of the Competence Network for Congenital Heart Defects. The joint efforts of physicians, patients and researchers within the scope of the research network’s boards ensures independent research yielding constantly verifiable results.

Cardiac Societies

The cardiac societies, above all the German Society of Paediatric Cardiology (DGPK), are the founding institutions of the National Register for Congenital Heart Defects. Accordingly, they are the cornerstones of the research network. They are represented by their members in the Management Boards of the National Register and the Competence Network, as well as in the Steering Committee, and are thus involved in all decision processes of the research network.

Patient and Parent Associations

In 2014, patient organizations in the field of congenital heart disease joined forces to set up the Aktionsbündnis Angeborene Herzfehler (coalition for congenital heart disease; ABAHF) on the initiative of the Deutsche Herzstiftung (German heart foundation). The Competence Network for Congenital Heart Defects is in close dialogue with the ABAHF. The patient associations are represented in the research network’s review board by the Bundesverband Herzkranke Kinder e. V. (federal association for children with heart disease). Furthermore, the Bundesverband Herzkranke Kinder e. V. (BVHK), the Bundesvereinigung Jugendliche und Erwachsene mit angeborenem Herzfehler (national association of adolescents and adults with congenital heart disease; JEMAH e. V.) and the Deutsche Herzstiftung e. V. are members of the Competence Network for Congenital Heart Defects. The BVHK is also a member of the National Register.

Membership

As an associated member of the TMF - Technologie- und Methodenplattform für die vernetzte medizinische Forschung e.V. (TMF), the Competence Network for Congenital Heart Defects contributes to the improvement of technological and methodological standards in research. The TMF is the umbrella organization for networked medical research in Germany. The platform allows multidisciplinary exchange, as well as collaboration across projects and locations. Thus, organizational, ethico-legal and technological problems of modern medical research are able to be solved.