These key questions were the focus of a workshop at this year’s Medical Informatics Europe (MIE2025). Under the title “What Does Registry Data Cost? And What is the Data Worth?”, we discussed the economic framework conditions of medical registry work together with the TMF (Technology and Methods Platform) for networked medical research, the AKTIN emergency admission registry and the German cancer registries.
After an overview of the German registry landscape and various financing models, we were able to present the special features and previous successes of the National Autopsy Registry (NAREG). Particular emphasis was placed on the financing concept, which is made possible by NATON’s funding via the University Medicine Network: Case fees (per autopsy performed) can thus be distributed annually to the participating centers – a targeted recognition for the continued manual and resource-intensive data entry. This model makes a decisive contribution to sustainable registry management and the promotion of autopsy research.
Following several short speeches, the workshop focused on open exchange and international networking. Representatives from a total of 13 countries, including Korea, the USA, Norway and Croatia, engaged in intensive discussions about challenges and solutions for financing patient registries. New impetus was generated and collaborations initiated.
Together with the TMF Registry Working Group, we would like to continue this international dialog and actively shape cross-border quality development in registry research.
We would like to thank all participants for the valuable and inspiring exchange!
