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International Team Reports on VWD Census and Upcoming Treatment Study

The Von Willebrand Disease Prophylaxis Network, an international study group of 14 VWD physicians and researchers funded by ZLB Behring, made two announcements at the 2006 World Federation of Hemophilia (WFH) Annual Congress in Vancouver, British Columbia. On May 22nd the network reported the completion of an international census of von Willebrand disease (VWD) patients. On May 23rd it announced the start of an international prophylactic (preventive) VWD therapy study.

The network collected information from 74 centers in Europe and North America. Of the 6,208 individuals with VWD there were 4,687 patients with Type 1, 1,181 with Type 2 and 340 with Type 3. Results showed that patients with the more severe Types 2 and 3 were twice as likely to be from Europe than from North America (32.1% vs. 16%). Census data also shed light on clinical management of VWD, showing that 75 of the 101 patients on prophylaxis treatment were Type 3. The most common reasons cited for beginning prophylaxis were joint bleeding (40%), bleeding from the nose or mouth (23%) and gastrointestinal bleeding (14%). In addition, the study showed that 22% of Type 3 VWD patients manifested bleeding patterns severe enough to warrant prophylaxis.

"The findings of the VWD Prophylaxis Network highlight the risk of spontaneous bleeding faced by patients with Type 3 VWD and the need to better understand steps that can be taken to reduce bleeding episodes," said Miklos Fulop, Chief Executive Officer and Executive Director of WFH. Overall, 77% of patients with Type 3 VWD had bleeding episodes in the last year that necessitated treatment.      

The purpose of the VWD International Prophylaxis (VIP) Study is to look at several preventive treatment protocols in VWD patients with a history of spontaneous bleeding. As many as 200 patients with Type 1, 2 or 3 will be enrolled in this multi-center, observational study. Enrollees will be placed in four groups of 50, each focusing on a different bleeding indication: joint, gastrointestinal, menorrhagia (excessive blood loss during menstruation) or epistaxis/oral (bleeding from the nose or mouth). Investigators will observe how study participants respond to an increase in dose of factor replacement therapy from once weekly to twice and eventually three times per week. Researchers anticipate that the study outcomes will help them determine effective, preventive treatment regimens.

"By analyzing the use of medications used to prevent or control VWD bleeding, the VWD Prophylaxis Network hopes to offer the bleeding disorder community the answers needed to improve the quality of life of the 60 million people affected with VWD worldwide," said VWD Prophylaxis Network Chair Erik Berntorp, MD, PhD, principal investigator and Professor, Department of Hematology and Coagulation Disorders, Malmö University Hospital in Sweden.       

The VWD Prophylaxis Network was established in 2001. Its goals are to investigate the role of prophylaxis in protecting against or preventing bleeding episodes in clinically severe VWD, and educating healthcare professionals and consumers about VWD.

Source: ZLB Behring news releases dated May 22nd and May 23rd 2006