The National Register for Congenital Heart Defects (NRAHF), a central pillar of research into the care of people with congenital heart defects in Germany, is on the verge of closure. After more than 20 years of government support, the basic funding expired in 2025, jeopardizing research for over 500,000 people affected. A petition, supported by more than 1,000 people in just four days, calls on the federal government and the Bundestag to secure the register.

Every year, about 7,000 children are born in Germany with a congenital heart defect, the most common organ malformation. Thanks to advances in cardiac medicine, more than 90 percent reach adulthood, but most remain chronically ill. The NRAHF, which collects data and samples from around 60,000 patients and their relatives, enables multicenter research on causes, secondary diseases and optimal long-term care. With over 80,000 digitized doctor’s letters, it is one of the world’s largest data sources for this disease.

The variety of more than 200 different heart malformations makes the registry indispensable, as individual cases are often too rare for meaningful studies. It supports early detection, improved treatment and the development of child-friendly medical devices. Close cooperation with clinics, professional societies and patient organisations as well as high standards of data protection and ethics make the NRAHF an internationally recognised role model.

The annual costs of about one million euros for data and sample management cannot be covered without state funding. After the abrupt stop of funding by the Federal Ministry of Education and Research , there is a threat of a research standstill. The Action Alliance for Congenital Heart Defects (ABAHF) warns of serious consequences for the quality of life and chances of survival of those affected. Future projects such as the use of artificial intelligence for the analysis of medical data are also at risk.

The petition, supported by professional societies such as the German Society for Pediatric Cardiology and the Association for the Promotion of German Children’s Heart Centers, calls for a sustainable financing solution. Without this, Germany is at risk of losing a resource built up over decades, with significant health and economic consequences.

Further information:

Who conducts research with the register? Find the participating clinics on site on our map .

Service:

The petition can be signed here.

Do you or your child have a congenital heart defect? By registering in the National Register for Congenital Heart Defects, you are supporting medical progress. Here you will also find important information on current research projects and support services. Membership is free of charge and can be revoked at any time.

Editor: X-Press Journalistenbüro GbR

Gender Notice. The personal designations used in this text always refer equally to female, male and diverse persons. Double/triple naming and gendered designations are used for better readability. ected.