After realizing the current gaps in knowledge regarding bleeding in women with VWD, the Angelo Bianchi Bonomi Thrombosis and Haemophilia Centre, University of Milan, established a data collection scheme, through collaboration with centres in the UK, Germany, Serbia and Iran, to evaluate the epidemiology and clinical characteristics of bleeding episodes in women affected with different types of VWD. Preliminary data from 193 patients show that menorrhagia occurred in 70% of patients compared with 46% of controls, and 81% of patients

required treatment. GDC 0068 In addition, acute bleeding episodes occurred at least once in all women, sufficient to require a blood transfusion. These preliminary data should help to identify the optimal management approach for this patient population.

In conclusion, despite the relatively small sample sizes and the type of data collection in studies reported to date, women with VWD are at increased risk of bleeding; however, it is necessary to increase the sample size of different types find more of VWD and to include controls. Appropriate treatment could significantly improve the quality of life (academic, social and professional) of these patients. The low incidence of haemophilia in the general population necessitates close cooperation among haemophilia treatment centres (HTC) to optimize treatment strategies. To achieve this goal, the Kompentenznetzwerk Hämorrhagische Diathesen Ost (Network for Coagulation Disorders) was founded in the eastern part of Germany. All HTCs in this region were requested to participate in the network. Of the 37 known haemophilia treatment centres in the area, 31 (83%) actively participated. Unlike patients in other countries, those in Germany resist travelling long

distances for treatment. Most patients prefer to visit local clinicians rather than attend comprehensive centralized treatment clinics such as the eastern region’s only large centre in Berlin. Some centres treat very few patients: in the eastern part of Germany there are 17 centres where clinicians see only 1–10 patients with severe haemophilia. The aim of the network is therefore to collect epidemiological data, deliver knowledge to practitioners in these small centres to provide standardized treatment regardless of town size or location and, in turn, to selleck compound acquire data on treatment practice and regimens. The present project undertook the collection of data in patients with severe haemophilia A according to treatment modalities and annual FVIII consumption in the eastern part of Germany. Data from 224 patients with severe haemophilia A were analysed, with a focus on findings obtained in 2007 and 2009. Results demonstrate that the incidence of severe haemophilia A is highest in the age group 40–49 years (n = 71) and declines thereafter (Fig. 1). A total of 65% of adult patients (20 years and older) received prophylactic treatment with FVIII.