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Nachrichten, Termine, Experten
Nachrichten, Termine, Experten
An era is coming to an end. Ulrike Bauer (66) is leaving the management board of both, the Competence Network for Congenital Heart Defects and the National Register for Congenital Heart Defects. The pioneer of patient-oriented research into congenital heart defects in Germany is handing over responsibility for one of the world's largest research databases to her successors.
For more than 25 years, Ulrike Bauer dedicated herself to patient-oriented research on congenital heart defects. Now, the 66-year-old physician and managing director of the Competence Network for Congenital Heart Defects and the National Registry for Congenital Heart Defects is retiring.
Justus-Fabian Steffens will take over the business management of the research network on 1st of July 2025. The 47-year-old holds a Master of Arts in International Business and has been responsible for the financial and funding management of the National Register since 2007. Constanze Pfitzer (37), a doctor and scientist at the German Heart Centre Charité (DHZC), will head the scientific management.
The Establishment of a Globally Unique Research Infrastructure
For many years, Ulrike Bauer worked alongside the paediatric cardiologist Professor Peter E. Lange, co-founder of the Division for Congenital Heart Defects at the German Heart Centre Berlin, to develop the National Registry. Professor Lange passed away in 2020. Building on his pioneering work, Ulrike Bauer and her team have successfully established the National Registry (NRAHF) as an internationally recognised foundation for patient-oriented research.
Today, over 60,000 participants have voluntarily provided their data and samples to the NRAHF, enabling it to record the long-term course of their diseases. This is unique in the world. Numerous research findings from the NRAHF have since been incorporated into guidelines.
Research Across the Entire Lifespan
Thanks to major medical advances in the therapy of congenital heart defects, most children with these conditions can reach adulthood. Further research is urgently needed to ensure that patients receive the best possible treatment in later life. However, without systematic nationwide data collection and sampling, it is difficult to obtain reliable findings.
The range of the most common congenital cardiac malformations is wide, and specific diagnoses are rare. Only the growing research base of the National Registry, complete with its biobank, enables multicentre research and representative long-term studies across the entire lifespan.
The Executive Board Honours her Achievements
Not only is there a sophisticated concept for protecting patients and ensuring data security, but also Ulrike Bauer's tireless fight for public funding for this research infrastructure, as emphasised by Professor Anselm Uebing, Chairman of the Executive Board of the Competence Network and the National Registry. Ulrike Bauer also believed that it was important for everyone involved in the Competence Network, including patient and parent associations, doctors and researchers, to work together. “Such a research network guarantees independent research that focuses on patients' quality of life and leads to results that can be implemented in practice as quickly as possible,” says Uebing, praising her achievements.
The NRAHF is Facing Another Mammoth Task
Until recently, Ulrike Bauer had successfully steered the organisation forward despite tough austerity measures. But at the end of last year, amid the government crisis, the Federal Ministry of Education and Research withdrew its funding completely. With the Controlware Foundation in Hesse, a renowned private sponsor has been won over for funding the NRAHF's digitalisation strategy and thus its innovative further development in 2025.
However, maintaining the research infrastructure in the long term is once again a mammoth task for the NRAHF: to achieve this, the internationally recognised Best Practice Register urgently requires around 1 million euros per year from autumn onwards. Only with a secure financial basis can patient-oriented research into congenital heart defects continue in Germany continue to deliver reliable results in the future.
https://www.kompetenznetz-ahf.de/en/
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