The TMF Establishes a Workgroup on Medical Registries
The TMF Registry Workgroup was established on February 8, 2023, and deals with medical registries. © TMF
Registries are important tools for measuring quality in the healthcare system, improving established treatment methods, and developing new therapies. In many registries, healthcare-related data is collected over a longer period of time. This creates important databases, both for healthcare and for research. In order to further develop the registry landscape and promote the exchange between registry operators, data users, and policymakers, experts founded a registry workgroup on February 8, 2023, as part of the Technology and Methods Platform for Networked Medical Research (short: TMF).
The TMF Registry Workgroup is concerned with how patient-related registries can be further developed in light of changing health policy conditions and technological possibilities to be used even more beneficially for medical research and healthcare research.
Important topics include the formulation of standards for registries, the harmonization, and linking of databases, quality management in the registry, as well as business aspects of registry operation. Another theme is the evaluation of registries and how the proof of use of registries can be carried out.
TMF board member Prof. Dr. Rainer Röhrig from the University Hospital RWTH Aachen explains:
The workgroup's central task is to maintain and further develop the maturity model designed in the Federal Ministry of Health's register report.
The maturity level of a registry describes the stage of development of a registry. This depends on the purpose of the intended use of the data. The different purposes for which the data of a registry can be used are categorized in the maturity model in so-called usage dimensions. "The model must now be tested in practice and developed further," says Röhrig.
Registries continue to benefit when the patients concerned actively contribute with their questions. The involvement of patient representatives is, therefore, essential for the further development of the maturity model.
Given the increasing internationalization of medicine, aspects relevant to registries will also be discussed, and a European network of registries will be supported.
Registers Are Important Tools In Medical Research
Registries are an essential instrument of health services research. On the one hand, to describe health and patient care and on the other hand, to contribute to the medical and organizational improvement of the health system by developing and evaluating new concepts while taking costs into account. "The TMF Registry Workgroup is intended to contribute to advancing the registries' quality and further improve the conditions for optimal use. The further development of the registries will be carried out in close cooperation with the German Network for Health Services Research (DNVF)," explains the TMF’s Executive Director Prof. Dr. Wolfgang Hoffmann from the University Medical Center Greifswald.
Sebastian C. Semler, Managing Director of the TMF, says:
With the new workgroup, the TMF is successfully continuing its preliminary work in the field of registries over the last 20 years.
Hence, the TMF wrote a registry report for the Federal Ministry of Health in 2021, which provides guiding recommendations for the further development of registries. Since 2017, the TMF has also been coordinating the accompanying project funded by the Federal Ministry of Education and Research for the model health services research registers.
"We are pleased that this bundling has been successful and hope to make a contribution to further digitalization in medicine and the connection of registries to national infrastructures," says Semler. The workgroup not only wants to offer expert support for registry operators, but also actively contribute to the further development of the registry landscape and improve the quality and interoperability of registries in Germany. To achieve this, the workgroup will refer to the expertise of already established workgroups such as Data Quality, Data Protection Workgroups, and IT Infrastructures.
In addition to networking among registry experts, intensive cooperation with registry working groups of other networks and initiatives, particularly with the DNVF and the Association of Scientific Medical Expert Associations, is being sought.
Press Contact
Wiebke Lesch
Phone: +49 30 2200 24731,
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About the TMF
The TMF – Technology and Methods Platform for Networked Medical Research e.V. stands for research, networking and digitisation in medicine. It is the umbrella organisation for collaborative medical research in Germany, within which leading researchers exchange knowledge, jointly develop ideas and concepts, and thus shape the future of medical research in the digital age. In 2019, TMF launched the Register Days in cooperation with the German Network for Health Services Research (DNVF).
