Type 3 von Willebrand disease: assessment of complications and approaches to treatment -- results of a patient and Hemophilia Treatment Center Survey in the United States

Haemophilia : the Official Journal of the World Federation of Hemophilia
M Sumner, J Williams

Abstract

It has been reported many times that the optimal treatment of patients with von Willebrand disease (VWD) has yet to be determined. To assist in achieving this goal, the aim of this survey was as follows: to collect information on current treatment practices; to determine the impact of the disease in type 3 VWD patients in the USA and to gain insight into the perceived and actual role that prophylaxis therapy plays in patient management. Nurse coordinators of the 146 federally funded Hemophilia Treatment Centers (HTCs) in the USA were contacted and informed of the survey and its goals. Those caring for type 3 VWD patients and willing to participate in the survey were mailed two questionnaires. The first questionnaire addressed the overall VWD patient population at their centre and asked questions relating to treatment practices. The second questionnaire focused on the impact that type 3 VWD has upon a patient's life. Thirty-four centres responded to the survey, providing a 48% response rate within the available pool of those centres treating type 3 VWD patients. Seventy-nine patients, with a mean age of 24.2 years, reported their primary causes of bleeding as; epistaxis (53.9%); joint bleeds (40.9%); dental bleeds (27.6%) and he...Continue Reading

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Citations

Jun 23, 2012·Acta Haematologica·Augusto B Federici, Paula James
Nov 5, 2005·Blood Coagulation & Fibrinolysis : an International Journal in Haemostasis and Thrombosis·Massimo FranchiniGiorgio Gandini
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May 12, 2017·Thrombosis and Haemostasis·Karin P M van GalenOn Behalf Of The Win Study Group
Aug 20, 2015·Therapeutic Advances in Hematology·Anne T Neff
Jan 11, 2020·The Journal of Small Animal Practice·P GantK Humm
Dec 30, 2021·Haemophilia : the Official Journal of the World Federation of Hemophilia·Eva K KempersUNKNOWN WiN study group

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