In April 2026, a project was launched to prepare the connection of the National Registry for Congenital Heart Defects (NRAHF) to the platforms of the Network of University Medicine (NUM). The aim is to create the conceptual and structural prerequisites for integrating the registry's extensive data and biosample collections into the NUM's Research Infrastructure in the future.
The project will run until the end of 2026. Depending on the results, the actual technical connection is to take place in a follow-up project from 2027.
With its many years of expertise, the NRAHF brings key strengths to the NUM: cross-sector data collection, long-term follow-up across all age groups, established data protection and consent processes and a quality-assured biobank in accordance with FAIR principles. At the same time, the project closes an important gap, as congenital heart defects and acquired cardiovascular diseases in minors have not yet been mapped in the NUM.
Both sides will benefit from the planned connection: The NRAHF can utilise existing NUM infrastructures such as data platforms, laboratory and imaging systems, while the NUM expands its database.
Further information:
NRAHF website