WFH NETWORK

Have your say: VWD clinical practice guidelines

The World Federation of Hemophilia (WFH) invites the global bleeding disorders community to comment on the draft guidelines for the diagnosis and management of von Willebrand disease (VWD) through an online public comment survey, open from April 7 to May 15. The survey is the result of a collaboration between the WFH, the American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), the National Hemophilia Foundation (NHF), and the University of Kansas (KU) Medical Center. VWD is the most common bleeding disorder. Approximately 1 in 1,000 people experience symptomatic bleeding from VWD.

How the VWD guidelines were developed

In the summer of 2018 the WFH and its partners reached out to the VWD community to complete a questionnaire on the relative importance of potential topics to be addressed by the guidelines. The response of the community was enormous: over 600 individuals from 71 countries on six continents participated. About half of respondents were healthcare professionals and the other half were people with VWD or their carers. This remarkable response provided a solid foundation for the prioritization of the work of the two guideline panels, and the results of the survey have been published in a free-to-access Haemophilia journal article.

Provide your feedback and help improve the guidelines

The WFH encourages the public and all global VWD stakeholders to help improve the VWD clinical practice guidelines draft document by providing their feedback through an online survey, available here. All input received will be provided to the guideline panels for consideration as they finalize the guidelines. The WFH strongly encourages everyone to participate in this important step of refining the draft to develop final VWD clinical practice guidelines.

Completing the public comment survey is completely voluntary. Each recommendation is presented in the context of its accompanying remarks and an optional link to further supporting materials is provided, should you wish to consult them. The online survey provides the opportunity for you to comment on all of the recommendations of both the “Diagnosis” and the “Management” panels, but you can choose to respond to the questions or recommendations that are most important to you or skip from one to another. You will have to identify yourself when you leave your comments, but the responses will be summarized and reported together without any identifiers.

Who can take part in the survey?

If you know someone else who has VWD, cares for someone with VWD, or is a hematologist or other healthcare professional working with people with VWD, please share this link with them and invite them to complete the public comment survey. The more responses we receive, the better the final guidelines will be.

The WFH thanks in advance everyone taking part in this important endeavour. If you have any questions or concerns, please contact the WFH at [email protected]. To learn more about VWD, visit the WFH eLearning Centre.

Note: individuals may receive the invitation to provide their comments more than once, as each collaborating organization reaches out to their community and sends out reminders. Individuals should only complete the survey one time in order to avoid duplication which decreases the accuracy of the information collected.