The Paul-Ehrlich-Institut, Federal Institute for Vaccines and Biomedicines, has published the 2021 Annual Report on the German Haemophilia Registry (DHR). 137 clinics, treatment centres and specialised medical practices reported data from a total of 17,036 people with blood clotting disorders. More than 900 patients have newly agreed to submit an individual data report within the last two years. This means that, for the first time, significantly more than half of those affected with severe haemophilia A (57%) or severe haemophilia B (56%) were recorded in individual reports.
The DHR is a clinical registry with the aim of improving medical research and care for persons with haemostasis disorders – haemophilia A, haemophilia B, von Willebrand disease, or other coagulation factor deficiency diseases. Therapy options, such as modified factor preparations, monoclonal antibodies, or gene therapeutics, can be tracked using the DHR, allowing for long-term observation of and research on their development.
Pursuant to section 21a of the German Transfusion Act (Transfusionsgesetz, TFG), the Paul-Ehrlich-Institut has been required since 1 August, 2019, to manage the DHR in cooperation with the two patient associations – the Haemophiliacs Interest Group (Interessengemeinschaft Hämophiler e.V., IGH) and the German Haemophilia Society (Deutsche Hämophiliegesellschaft, DHG) – as well as the Society for Thrombosis and Haemostasis Research (Gesellschaft für Thrombose und Hämostaseforschung, GTH). The registry has been in operation since December 2008. The Paul-Ehrlich-Institut publishes an annual report with general reporting and consumption figures as well as information on the structure of the DHR.
Updated: 08.12.2023
