To date, congenital heart defects and acquired cardiovascular diseases in minors have not been included in the NUM. The NRAHF-NUM project closes this gap: it establishes the conceptual and registry-related prerequisites for transferring the NRAHF’s data and biobank collections into the NUM’s Research Infrastructures in the future and for collecting further data and samples via the NUM platforms.

The NRAHF contributes proven structures to this effort – including long-term follow-up data, cross-sector patient registration, quality-assured multicentre biobanking processes, and established consent and data custodian management. In return, the NRAHF benefits from the existing NUM infrastructures (including LIMS, EDC, and omics databases), enabling it to eliminate duplicate structures and streamline processes. At the same time, this integration enhances the international visibility of German cardiovascular research.

The actual transfer of data and biosamples is scheduled for a follow-up project in 2027. Furthermore, the NRAHF’s participation in other NUM projects is planned.