About Us
A Strong Network
Ensuring Independent Research
For patients with congenital heart disease or acquired heart disease diagnosed during childhood or adolescence, as well as their families, practice-oriented research is highly promising. It is an important prerequisite for an improved healthcare and quality of life.
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.
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Overview
Competence Network with Register
The Research Network
At the Competence Network for Congenital Heart Defects with the National Register for Congenital Heart Defects as its centerpiece, stakeholders from medicine and research, the public, politics and economy collaborate for medical progress.
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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.
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Deutsche Gesellschaft für Pädiatrische Kardiologie und Angeborene Herzfehler e. V. (DGPK)
Website: http://www.kinderkardiologie.org/ -
Arbeitsgemeinschaft Niedergelassener Kinderkardiologen e. V. (ANKK e. V.)
Website: http://www.ankk.de/ -
Arbeitsgemeinschaft Leitende Kardiologische Krankenhausärzte e. V.
Website: https://www.alkk.de/ -
Bundesverband Niedergelassener Kardiologen e. V.
Website: https://www.bnk.de/ -
Deutsche Gesellschaft für Kardiologie – Herz- und Kreislaufforschung e. V. (DGK)
Website: http://dgk.org/ -
Deutsche Gesellschaft für Thorax-, Herz- und Gefäßchirurgie e. V. (DGTHG)
Website: https://www.dgthg.de/de
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.
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Bundesverband Herzkranke Kinder e. V. (BVHK)
Website: https://www.bvhk.de/ -
Bundesvereinigung JEMAH e. V.
Website: http://jemah.de/ -
Deutsche Herzstiftung e. V.
Website: https://www.herzstiftung.de/ -
Fontanherzen e. V.
Website: http://www.fontanherzen.de/ -
Herzkind e. V.
Website: https://www.herzkind.de/ -
Interessengemeinschaft Das Herzkranke Kind e. V. (IDHK)
Website: https://www.idhk.de/
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.