The National Hemophilia Foundation (NHF) will collaborate with the American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), the 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).
“This collaboration has the potential to be very impactful for our community,” says Val D. 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 of the condition. The panels are made up of more than 20 individuals, including US-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 that 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 where guidelines could improve care and health outcomes important to VWD patients and their caregivers.
The majority of participants 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.