The professional association for documentation and information management in medicine (DVMD)

Clinical registries are increasingly gaining attention – this was demonstrated by the contributions and the resonance of the 4th DVMD Spring Symposium in Munich, Germany on March 21, 2023. More than 80 participants, primarily health information managers, service providers and researchers, discussed objectives, benefits and formats of clinical registries. These include, in particular, data management, data security, analysis of data and legal aspects.

With the aid of clinical registers, complex disease and treatment processes can be systematically mapped over a longer period of time. Clinical registries, in addition to clinical studies are the most important tools for researching new therapies and improving established treatment methods. Epidemiological cancer registries are a good example: their nationwide availability in Germany makes it possible to gather information on the incidence and prevalence of the different types of cancer; about its distribution in accordance with the age, gender and place of residence of the patients, as well as about the liklihood of surviving.

The Implant Registry Germany (IRD) based on the Implant Register Act (IRegG) is a nationwide registry established to improve the safety and quality of implants and medical care with implants. In the first stage, only breast implants will initially be covered. Mandatory reporting will start in January 2024. Knee and hip implants will follow in the second stage. The implant registry essentially collects data that are already routinely recorded in the information system of the health care providers (e.g., information on the operation, findings, diagnoses and the implant). In addition, the registry regularly receives information from the statutory and private health insurance companies as to whether a registered patient is still alive or has died in the meantime.

There currently exists about 400 German registries, a major number of them without a statutory requirement to report data. The present discrepancy between “too little” and “too much“ unused data stressed the need for the establishment of a nationwide registery database. Challenges lie in making further improvements in the use of registries for care research and in linking them with external data sources. The key message of this symposium was that the future lies in the interconnection of registery databases.

An important component of the future health data architecture is the new Register Law, which aims to open up data used for research and development in medical technology. To achieve this, a decentralised research data infrastructure is to be established. The upcoming Register Law is intended to provide the basis for a sustainable register structure in register-based research. Clinical Registries are designed to document health care processes and generate evidence-based knowledge. The planned Register Act is about improving access to and use of register data in order to improve the use of health data.

At the DVMD spring symposium, it clearly became evident during the discussions that the interconnection of clinical registries with each other and with other data sources is increasingly coming into focus. Interconnectivity and interoperability are central pillars for a connected health data ecosystem. They open up new dimensions of knowledge generation for register-based research.

We are delighted that Phyllis Watson from Australia and honorary member of the DVMD participated in this symposium. What an honour for the DVMD and this conference! The spring symposiums of the DVMD take place every two years. In the years in between, the association organises its conferences. Next year, the symposium will take place on 07 and 08 May in Hanover, Germany.

The DVMD e.V. represents the interests of all professionals in the field of documentation and information management in medicine. Founded in 1972, the association currently has around 800 members, including private individuals and companies. The DVMD is committed to high quality standards in training and studies, as well as to the professional development of its members. Cooperations with related associations and federations enable the building of networks on a national and international level.



Angelika Haendel, M.A., B.Sc.
Quality manager & DRG controller, Universitätsklinikum Erlangen, Germany
DVMD board member