The aim of the exchange in the German Bundestag was to bring together perspectives from politics, science, and healthcare, providing concrete impetus for the ongoing legislative process. Among the participants was Stephan Albani MdB, rapporteur for health research for the CDU/CSU parliamentary group.
Registries as the Key to Better Care
For people with rare diseases, medical registries are of central importance. Due to low case numbers and often lengthy diagnostic pathways, they provide a vital foundation for understanding disease progression, advancing therapies, and improving care. However, Germany still lacks a sufficiently networked and sustainably secured registry landscape. In this context, the initiative for a Medical Registry Act is particularly welcome. The Act aims to provide a comprehensive framework to structure registries, ensure their quality, and improve the use of data for rare diseases.
Unlocking Potential for Rare Diseases – Removing Barriers
At the same time, for the Act to reach its full potential, the specific requirements of rare diseases must be systematically considered. This includes:
- addressing the particular challenges faced by small and often resource-limited registry structures,
- practical solutions for accessing and linking data across registry boundaries,
- and sustainable funding to ensure long-term operations.
Especially in the field of rare diseases, it is crucial to better connect and utilize existing data from healthcare, research, or screening programs. The true value of registries is not in data collection alone, but in structured access to this data and its use for research and medical care.
Anchoring Rare Diseases in Law
A key concern remains the clear inclusion of rare diseases in the law itself. They should not only be considered, but explicitly named as a particularly relevant target group for future-proof registry policy. This sends an important political signal and ensures that the specific needs of more than four million affected people in Germany are systematically addressed.
The expert discussion was an important and constructive exchange, laying a strong foundation for shaping the law further. We thank all participants for their open and engaged dialogue and look forward to continuing this process throughout the legislative journey.
