International VWD guidelines development collaboration exemplifies patient involvement

Healthcare professionals and people with von Willebrand disease (VWD) from around the world have been unified in identifying a pressing need for international clinical guidelines for the diagnosis and management of the condition . In yesterday’s session, “WFH Educational: Patient focus – ASH ISTH NHF WFH guidelines on the diagnosis and management of VWD” Paula James, MD, FRCPC explained how the American Society of Hematology (ASH), the International Society on Thrombosis and Hemostasis (ISTH), National Hemophilia Foundation (NHF), and the World Federation of Hemophilia (WFH) heeded this call, forming an unprecedented international collaboration to fulfill this need in 2017.

The collaboration not only features a broad representation of clinical and scientific experts, but also experts on living with VWD from around the world. Mark W Skinner, JD, NHF co-representative in the collaboration, demonstrated how this results in recommendations that inspire greater trust in the community and increase the likelihood of them impacting personal care and practice decisions.  In a world premier, Nathan Connell, MD, MPH, clinical vice-chair of the guideline development panels, previewed two of the draft recommendations resulting from this process. The next steps in this exciting project include finalization of the manuscripts detailing the recommendations, and submission for peer review with publication anticipated for December, 2020.

To watch sessions from the WFH Virtual Summit – Connecting the Global Bleeding Disorders Community, please click here.