The Registertage 2024, organized by the TMF Technology and Methods Platform for Connected Medical Research e.V., took place from May 16 to 17 in Berlin. The National Autopsy Network was present with the National Autopsy Register (NAREG) to contribute to the Health Data Utilization Act (GDNG). After a brief introduction to the establishment of the register and the successes of DeRegCOVID, the individual paragraphs of the GDNG were examined in detail, demonstrating how the new legislation affects the register.
In addition to the GDNG, other politically relevant topics included the Register Law and the European Health Data Space (EHDS). Georg Schmidt, chairman of the Working Group of Medical Ethics Committees (AKEK), provided key insights. He announced that he would abandon the coordinated ethics procedures, which have not proven effective in practical implementation, in favor of developing conditions for “One Study – One Vote,” whereby a single vote from an ethics committee would suffice for multicenter studies (lead principle). This initiative aims to improve the framework conditions for registers and also announces a submission portal for registers/studies, uniform application documents, defined evaluation criteria, and the binding nature of AKEK decisions.
On the second day of the Register Days, networking, participation, and quality assurance in registers were the main focus of the sessions. Overall, the Register Days once again provided a valuable platform for exchanging and discussing current topics and challenges in register research.
Thank you to the TMF for organizing this event. For more information, please visit here and on Twitter/X @tmf_eV and @NATON_network.
