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The von Willebrand Disease Prophylaxis Network (vWD PN)
Research benefiting people with von Willebrand Disease
Results from cohort and registry studies confirm that a subset of people with von Willebrand Disease (vWD) experience a significant degree of morbidity from mucosal bleeding (eg, epistaxis), gastrointestinal (GI) bleeding, menorrhagia, and joint bleeding (Lak. British Journal of Haematology. 2000). Studies conducted in Sweden have shown dramatic decreases in bleeding frequency after onset of prophylactic treatment (Berntorp. Seminars in Thrombosis and Hemostasis. 2006). Notably, subjects who began prophylaxis at an early age because of mucosal bleeds never developed joint problems later in life. The vWD Prophylaxis Network (vWD PN) is an international study group formed with the goal of investigating the role of prophylaxis in clinically severe vWD (Berntorp and Abshire. The Journal of Thrombosis and Haemostasis. 2006).
To determine the feasibility of initiating a study of the effect of prophylaxis, investigators in Europe and North America collaborated to first describe the vWD population under their care. A survey conducted in 74 centers in Europe and North America showed that of 6,208 people cared for, 102 (74.5% type 3, 17.6% type 2, and 7.8% type 1) were receiving prophylaxis. The most frequently cited reasons for initiating prophylaxis were joint (40%), epistaxis/oral (23%), and GI bleeding (14%) and menorrhagia (5%). People with type 3 vWD were more likely to be receiving prophylaxis in Europe than in North America; 28.7% compared with 12.2% (P=0.0004).
Based on these findings, the vWD PN initiated the vWD International Prophylaxis (VIP) Study with the goal of establishing optimal treatment regimens for the most common bleeding indications through prospective and retrospective data collection. We believe that these efforts will greatly benefit a substantial portion of people, especially those with type 3 vWD, who are most severely affected by the disease.
For questions about this study, please contact Joel Bowen at firstname.lastname@example.org.
For more information about this research from ClinicalTrials.gov, please see below.