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From Fragmentation to Transparency: Exploring and Mapping the Landscape of Medical Registries in Germany
Anna Niemeyer1, Christof Veit2, Sebastian C Semler1
1TMF e.V., Berlin, Germany.
Studies in Health Technology and Informatics
|May 23, 2026
Summary
Germany has 423 medical registries, established between 1929-2025, with diverse funding. Future efforts should focus on interoperability and standardized quality to enhance real-world data utilization in healthcare.
Area of Science:
- Health Services Research
- Public Health
- Data Science
Background:
- Medical registries are crucial for evidence-based healthcare, research, and policy.
- A comprehensive overview of German medical registries is currently unavailable.
- Real-world data from registries support quality assurance and health policy development.
Purpose of the Study:
- To map the landscape of medical registries in Germany.
- To characterize their structures, funding, and interoperability potential.
- To assess the current state of real-world data infrastructure in German healthcare.
Main Methods:
- Analysis of data from the national online registry catalogue (as of July 2025).
- Descriptive summarization of categorical variables for identified registries.
- Inclusion of registries providing complete information for analysis.
Main Results:
- Identification of 423 medical registries founded between 1929 and 2025 (median 2013).
- Varied legal forms (49% reported) and funding sources (public, donations, industry).
- Heterogeneous funding landscape with a majority publicly funded.
Conclusions:
- Germany possesses a substantial and varied medical registry landscape.
- Key priorities include enhancing interoperability and harmonizing quality standards.
- Sustainable funding is essential for maximizing the value of registry data within the European Health Data Space.
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