With the draft bill for a Medical Register Law, the Federal Ministry of Health aims to strengthen the quality and use of registry data in Germany. Especially for rare diseases, where data is scarce and knowledge often lacking, robust registries are a key pillar for better care.
The Eva Luise and Horst Köhler Foundation for People with Rare Diseases has therefore submitted a statement on the draft together with the Berlin Institute of Health at Charité (BIH). We explicitly welcome the initiative, but also point out where improvements are needed for the law to reach its full potential.
Our statement focuses on six central recommendations:
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Name rare diseases and establish them as a prioritized target group
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Improve documentation for disease groups relevant to care
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Ensure sustainable funding for registry infrastructure and operations
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Fully realize the usage potential of registries
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Strengthen patient participation
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Ensure scientific oversight of the Center for Medical Registries
We will continue to closely follow the legislative process and advocate for a strong, reliable, and future-ready registry landscape for people with rare diseases.
You can download the complete document (German) here: Statement Medical Register Law
