As recently announced, the National Hemophilia Foundation is collaborating with ASH, ISTH, and WFH to create clinical practice guidelines for the diagnosis and management of von Willebrand Disease (VWD). Guidelines are intended to make recommendations that will inform both healthcare providers and patients in their decision-making especially where there is uncertainty or variation in clinical practice. In the initial phase of development, a stakeholder survey has been created to help determine the key topics to include in the guidelines.
We are inviting you, as a person with VWD , someone who cares for a person with VWD, or a clinician or other healthcare professional who treats people with VWD, to take part in this survey . Your responses will inform the development of the specific questions and outcomes covered by the guidelines. The survey is two pages; each page will take approximately 5-7 minutes to complete.
You may receive this survey invitation more than once, but please only complete the survey one time in order to avoid duplication. You are encouraged to share this invitation to participate in the survey with anyone else that fits into the stakeholder categories listed above. We appreciate your help in getting this survey out to as many stakeholders as possible; the more individual responses we receive the better informed the selection of topics for the guidelines will be.
Participation in this survey is completely voluntary. The survey is being conducted by the University of Kansas Medical Center, who are working with ASH, NHF, WFH, and ISTH, and taking the lead on the methodology of the guideline process and evidence synthesis. If you have any questions or concerns, please contact info@hemophilia.org or Robin Arnold at rarnold6@kumc.edu.
