Tuesday, November 18, 2025

Without Federal Funding from 2026 Onward, Germany’s National Registry for Congenital Heart Defects Faces Shutdown – Patients, Scientists and Associations Sound the Alarm

The National Registry for Congenital Heart Defects (NRAHF) is facing a historic turning point. For the first time in more than twenty years, no federal funding is being provided, and without a secured commitment from 2026 onward, one of the world’s most important research infrastructures for the most common organ malformation in humans is at risk of collapse. More than 60,000 patients have entrusted the registry with their data and samples, expecting that this foundation will drive life-improving research. Now, this foundation is under acute threat.

Hopes currently rest on the newly restructured Federal Ministry for Research, Technology and Space (BMFTR) and the German Bundestag. The implications are extensive: every 90 minutes, a baby with a congenital heart defect is born in Germany, amounting to around 7,000 children per year. More than half a million people nationwide live with such a diagnosis, many requiring lifelong specialized care. Without continuous research, risks remain undiscovered and treatment pathways unclear.

Testimonies from families, patients and experts illustrate the urgency. Families such as that of Michelle Wagner, whose daughter Edith survived thanks to advanced pediatric heart care, emphasize the value of the registry: “The work of the National Registry is priceless and absolutely essential.” Katrin and Patrick, whose son Jonas became the 50,000th participant, share similar experiences. Adults with congenital heart defects, including Christina Pack and Johanna Schlögl, also appeal passionately for political action to safeguard vital research.

Medical experts underline the consequences of a research stop. Dr. Constanze Pfitzer from the German Heart Center of Charité warns: “A heart defect is not simply a heart defect. More than 200 variations exist. To care for people optimally throughout life, we must understand each of them.” Prof. Dr. Dr. Gerhard-Paul Diller of Münster University Hospital notes that long-term research requires thousands of datasets to reach meaningful conclusions. Prof. Dr. Marc-Phillip Hitz also stresses the international relevance: the registry’s unique collection of data and samples forms the foundation for new preventive and therapeutic approaches worldwide.

Public support is growing. Around 38,000 individuals have already backed the petition on innn.it, after more than 15,000 citizens signed a Bundestag petition earlier in the year. Additional momentum came from a national Digital-Out-of-Home campaign by Ströer, with the “Every Heart Counts” message displayed for two weeks across major railway stations in Germany.

The initiative continues to call for broad support – online signatures, printable petition sheets, and engagement through local communities, workplaces and social media. Donation options help bridge short-term research needs, but the core remains unchanged: a sustainable government funding solution is indispensable.

Whether this decades-old research foundation can be preserved will be decided in the coming months. For thousands of families and patients, the loss would represent a severe setback. Every signature, every share and every public expression of support helps ensure that the registry can continue its vital mission – today and for future generations.