The National Hemophilia Foundation (NHF) will collaborate with the American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), World Federation of Hemophilia (WFH), and the University of Kansas Medical Center to develop clinical practice guidelines on the diagnosis and management of von Willebrand disease (VWD).
VWD is the most common bleeding disorder, affecting approximately 1 percent of the world’s population. This inherited condition results in the decreased production, absence, or abnormal function of the clotting protein von Willebrand factor. VWD can cause unusual bleeding from small wounds or minor procedures, frequent nosebleeds, bruising, bleeding in joints, and heavy menstrual periods. Symptoms may vary from patient to patient or in a single patient over the course of his or her life. Primary care providers, pediatricians, obstetricians, and gynecologists who observe unusual bleeding often refer these patients to a hematologist for further testing and management. Many patients with mild symptoms do not receive a diagnosis right away and live for many years with untreated bleeding.
“This collaboration has the potential to be very impactful for our community,” said Val Bias, CEO of NHF. “This collective effort will bring much needed information to medical professionals and play an important role in improving outcomes that are vital to the health of our families. The enthusiasm from so many stakeholders to becoming part of the guideline project speaks volumes to the potential of this initiative."
The goal of this effort is to create and maintain state-of-the-art guidelines on VWD. Two expert panels will produce recommendations for diagnosis and management. The panels are made up of more than 20 individuals, including U.S.-based and international hematologists, patients with VWD, and scientists with expertise in evidence synthesis and appraisal and guideline development methodology.
Panel members will identify and prioritize guideline questions based on the frequency with which a question arises in clinical practice, the degree to which there is variation in clinical practice, the extent to which the question has already been addressed by high-quality guidelines, and implications for resource utilization. In formulating questions, the panel will also place high importance on areas in which the development of guidelines could improve care and health outcomes important to patients and their caregivers.
The majority of individuals participating in the guideline development have no direct financial interests in companies with products that will potentially be affected by the guidelines. Furthermore, development of these guidelines is wholly funded by the sponsoring organizations.
This is the first time that ASH, ISTH, NHF, and WFH have collaborated on clinical practice guideline development and dissemination.