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 2022/23 annual report. The DHR is an online database that collects data on the diagnosis, medical history, and treatment of patients with blood clotting disorders. The 2022/23 annual report includes data from a total of 17,516 people with blood clotting disorders reported by 137 clinics, treatment centres and specialised medical practices. The report also provides information on the consumption of factor substitutes and monoclonal antibodies in Germany.
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Since 2008, the DHR has been collecting specific data from individuals with blood coagulation disorders from all over Germany. The expansion of the Transfusion Act in 2019 means that, in addition to persons with haemophilia A (HA), haemophilia B (HB) and von Willebrand disease (vWD), individuals with other factor deficiency diseases must now also be included in individual or collective reports to the registry. The registry's biggest benefit is that it is a neutral point for the collection of data on the treatment of blood clotting disorders. This data can be used for research purposes. The better that patients and doctors document their treatment and concomitant circumstances, the more valuable the data is for research. The proportion of individual reports has been steadily increasing for haemophilia A and B diagnoses since the switch to the new database in 2019. The higher the severity, the more meaningful data is submitted for patients in individual reports. Overall, the registry is very well received by patients and the doctors treating them. 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 research on their development.
Updated: 15.11.2024
