Morbidity and mortality of haemophilia patients in Germany

Since 1982, the multicenter study of the epidemiology of patients with haemophilia is carried out annually with the support of all sizes of haemophilia centers and treatment facilities. The long period of investigation has not only enabled the reporting of up-to-date mortality and morbidity status, but also of retrospective observations. The participating centers have made anonymized data available for patients with Haemophilia A, B and von Willebrand’s disease (total counts for treated patients, type and severity of the disease, HIV status and causes of death). For 2011–2012 3331 patients were reported with haemophilia A or B from 32 centers. Although the mortality from HIV/AIDS in haemophilia patients continues to decline, HIV infection remains clinically relevant since an HIV/HCV coinfection can raise the risk of severe liver disease. The data from the multicenter survey were, together with the anonymized data from the Foundation for Humanitarian Aid for Persons Infected with HIV though Blood Products, comparatively descriptively compared and the temporal progression illustrated by a so-called moving average. Expectedly, haemophilia patients were shown to be under-represented by the data from the multicenter survey. Otherwise, the data are consistent.