Paul-Ehrlich-Institut Publishes the 2023/2024 Annual Report from the German Haemophilia Registry

The Paul-Ehrlich-Institut, Federal Institute for Vaccines and Biomedicines and location of the head office of the German Haemophilia Registry (Deutsches Hämophilieregister, DHR), has published the DHR's 2023/24 annual report. The DHR is a national patient registry for collecting, compiling, and evaluating data on haemostasis disorders (blood clotting disorders). Medical facilities that treat patients with the blood clotting disorders haemophilia A, haemophilia B, von Willebrand syndrome, and other factor deficiency diseases on a permanent or regular basis are subject to reporting requirements. In 2023, 132 clinics, treatment centres, and specialised medical practices reported data from a total of 17,366 patients with blood clotting disorders to the registry. Experience has shown that the data supplied in the report for the most recent reporting year (2024) should initially be regarded as "provisional". The final version of the 2024 data will be published in the 2024/25 annual report. The report also provides information on the consumption of factor substitutes and monoclonal antibodies in Germany.

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The aim of the German Haemophilia Registry is to collect, check, and evaluate relevant medical data. The resulting anonymised data sets contribute to greater transparency and support healthcare research and scientific development. A major advantage of the patient registry is that data on the treatment of blood clotting disorders can be centrally collected at a neutral point and thus used for a variety of research purposes. Therapy options, such as modified factor preparations, monoclonal antibodies or gene therapeutics, can be tracked using data from the DHR, allowing for long-term observation of and scientific research on their development.