From Fragmentation to Transparency: Exploring and Mapping the Landscape of Medical Registries in Germany

Studies in health technology and informatics, vol. 336, pp. 1113–1117

Abstract

BACKGROUND: Medical registries are essential instruments for evidence-based healthcare, providing real-world data that support research, quality assurance, and health policy. Despite their growing relevance, an overview of existing registries in Germany is lacking. OBJECTIVE: This study aims to map the current landscape of medical registries in Germany and to describe their characteristics, funding structures, and potential for future interoperability between registries and real-world data. METHODS: Data from the national online registry catalogue, which is developed in collaboration with the German registry community, are analysed in July 2025. Categorical variables are summarised descriptively, considering only registries that provide information for each item. RESULTS: A total of 423 registries are identified, with founding dates ranging from 1929 to 2025 (median 2013). Only 49% provide information on their legal form, and one third of these have an independent legal status. The funding landscape is highly heterogeneous, with most registries publicly funded, followed by those supported by donations or the pharmaceutical industry. CONCLUSION: Germany hosts a large and diverse registry landscape. Future priorities include improving interoperability, harmonising quality standards, and ensuring sustainable funding to fully realise the potential of curated registry data within the European Health Data Space.

Authors 6

1. Anna Niemeyer
   Affiliation as printed

   TMF e.V., Berlin, Germany

2. Christof Veit

   BQS Institut für Qualität und Patientensicherheit (Germany)

   Affiliation as printed

   BQS - Institute for Quality & Patient Safety GmbH, Hamburg, Germany

3. Sebastian C. Semler
   Affiliation as printed

   TMF e.V., Berlin, Germany

4. Wolfgang Hoffmann

   Universitätsmedizin Greifswald · Universität Greifswald

   Affiliation as printed

   Institut for Community Medicine, University Medicine Greifswald, Germany

   TMF e.V., Berlin, Germany

5. Neeltje van den Berg

   Universitätsmedizin Greifswald · Universität Greifswald

   Affiliation as printed

   Institut for Community Medicine, University Medicine Greifswald, Germany

6. Rainer Röhrig Aachen Institute of Medical Informatics

   Universitätsklinikum Aachen · RWTH Aachen University

   Affiliation as printed

   Institute of Medical Informatics, University Hospital RWTH Aachen, Germany

   TMF e.V., Berlin, Germany