The European acquired haemophilia registry.
Acquired haemophilia is a rare bleeding disorder, occurring in approximately one person in every million. The mortality from bleeding is approximately 20%. The development of autoantibodies to factor VIII is commonly associated with the postpartum period, the presence of other autoimmune disorders, malignancy, lymphoproliferative disorders and previous multiple transfusions. Nevertheless, all these observations are based on a number of rather small case series. In 2001, the United Kingdom Haemophilia Centre Doctors' Organisation initiated a 2-year registry across the UK to provide more robust information on the incidence and clinical features of acquired haemophilia. This registry enrolled almost 200 patients. Analysis and publication of these data are underway. In order to collect data across Europe, the European Acquired Haemophilia Registry has recently been initiated. The Registry is run by an independent steering committee consisting of specialists in the field of acquired haemophilia, and collects data on clinical features and management of the patients, using a secure, Internet-based platform. All clinicians who treat patients with acquired haemophilia are encouraged to enrol consenting patients in the Registry. The data obtained in the Registry will provide a better understanding of acquired haemophilia, and may contribute to improving the treatment.
Watling
Mark
M
Novo Nordisk Limited, Crawley, UK. mwat@novonordisk.com
D003625:Data Collection; D005060:Europe; D006467:Hemophilia A / Q000453:epidemiology / Q000209:etiology; D006801:Humans; D012042:Registries