Register Days 2025: Registers as Building Blocks of a Digitally Networked Health Data Ecosystem
The TMF’s Managing Director, Sebastian C. Semler moderated the session "Patient Perspective: Registers from the Viewpoint of the Observed" with Stephan Kruip, Alexander Stahmann, Ute Quante, Franz Badura, and Maren Arndt. © TMF
Around 170 experts from science, politics, industry, and patient organizations gathered on May 13 and 14, 2025, in Berlin for the Register Days 2025. Under the motto "Registers – Perspectives for Better Data Utilization," they discussed how medical registers can be designed in the future to better utilize their data, also for regulatory purposes.
Dr. Ulrike Götting, Managing Director of the Association of Research-Based Pharmaceutical Companies (VFA). © TMF
A special focus was placed on how registers can become a central building block of a connected health data ecosystem in line with national developments and the European Health Data Space. "Registers are the pearls of the health data ecosystem because they consist of structured, high-quality, and curated data. With the register law mentioned in the coalition agreement, we want to promote the further development of medical registers, improve data usage, and prepare the connection of registers to the European Health Data Space," said MinR'in Jana Holland, Head of Department 311 at the Federal Ministry of Health at the Register Days. Dr. Ulrike Götting, Managing Director of the VFA, emphasized: "We need to make the register topic a winning topic. I advocate for speed! Register data must be reliable, practical, and research-friendly."
Registers are the pearls of the health data ecosystem because they consist of structured, high-quality, and curated data.
MinR'in Jana Holland, Federal Ministry of Health, Head of Department 311 "Medical Databases and Registers". © TMF
Register Law to Promote Better Data Usage of Registers
To achieve this, national and European frameworks must be designed so that registers are interoperable and their data can be used more effectively, securely, and beneficially. This should be achieved, among other things, through the register law announced in the new coalition agreement. "A register law must address nationwide uniform legal foundations for data processing for medical registers, enable direct data linkage with other data sources (record linkage), and allow for register-based studies. In addition, we consider a science- and community-oriented central office for medical registers (ZMR) as an indispensable support facility and contact point for science, healthcare, and funding," emphasized the TMF’s Managing Director Sebastian C. Semler.
TMF Managing Director Sebastian C. Semler. © TMF
Registers as a Study Platform
The data collected and curated by medical registers, which are quality-assured, offer significant potential for research and care, especially through digitalization. Registers can help create transparency about treatment realities and care quality, assess the effectiveness of measures in routine care, and evaluate the benefits of medicines, medical devices, or interventions. An increasingly important application of medical registers is the generation of care-related evidence for regulatory purposes, such as for benefit assessments, health technology assessments (HTA procedures), or register-based randomized controlled trials (rRCTs). "Reimbursement with evidence generation will become increasingly important in Germany in the future. Registers and register-based RCTs could play a central role because they are particularly suited for agile, long-term, and resource-efficient research," predicted Dr. Thomas Kaiser, Director of the Institute for Quality and Efficiency in Health Care (IQWiG), at the Register Days. However, a high quality of data and good access to data are prerequisites for this, as experts at the Register Days agreed. "To provide usable evidence for regulatory decisions, register data must be accurate, sufficient, consistent, timely, and valid. For regulatory authorities, data quality matters more than data quantity," emphasized Dr. Carla Jonker from the Dutch Medicines Evaluation Board (MEB).
Dr. Carla Jonker, Medicines Evaluation Board (MEB). © TMF
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Register Days 2025
At the Register Days, experts discuss what a modern, interoperable register landscape could look like. The event brings together the professional community from research, politics, and industry to address challenges related to patient-oriented registers, network, and set important impulses: for the development of quality in the register landscape, better use of register data, including for regulatory purposes, and modern register research.
About the TMF
TMF – Technology and Methods Platform for Networked Medical Research e.V. stands for research, networking, and digitization in medicine. It is the umbrella organization for collaborative medical research in Germany, within which leading researchers exchange knowledge, develop ideas and concepts together, and thus shape the future of medical research in the digital age.
