VWD Guidelines development—add your voice

As recently announced, the World Federation of Hemophilia (WFH) has joined a collaboration led by the American Society of Hematology (ASH), which also includes the International Society on Thrombosis and Haemostasis (ISTH), the National Hemophilia Foundation (NHF), and the University of Kansas (KU) Medical Center to develop clinical practice guidelines on the diagnosis and management of von Willebrand Disease (VWD). For more details on the collaboration and the process of guideline development, please click here.

Stakeholder survey to inform topic selection—now live

The collaborating organizations are now reaching out to the community for input on the very first step of guideline development: selecting which topics to address. Guidelines are intended to make recommendations that will inform both healthcare providers and patients in their decision-making on relevant and important issues where there is uncertainty or variation in clinical practice. The diagnosis of VWD is a broad topic, and the management of VWD can also include many different aspects. KU Medical Center has created a stakeholder survey in order to make sure that these VWD guidelines cover the topics that are most relevant and important to the community. The survey is two pages and will take approximately 10 to 15 minutes to complete. The survey is being conducted by the University of Kansas Medical Center, which is taking the lead on the methodology of the guideline process and evidence synthesis and working with ASH, NHF, the WFH, and the ISTH.

People living with VWD possess a unique expertise of the disease. Those that care for people with VWD bring another expert perspective, while hematologists and other healthcare professionals working with people with VWD each have important insights to share. The guideline development panels will be better able to make recommendations for diagnosis and management if they can learn from the experiences and expertise of as many stakeholders as possible. The WFH strongly encourages the following individuals to complete the survey:

  • People living with VWD
  • People caring for someone living with VWD
  • Hematologists working with people with VWD
  • Other healthcare professionals working with people with VWD

Pass the word, but complete the survey one time only!

If you know someone else who has VWD, cares for someone with VWD, or is a hematologist or other healthcare professional working with people VWD, please share this link with them and invite them to complete the survey a single time. The WFH needs your help in getting this survey out to as many stakeholders as possible. The more individual responses received, the better informed the selection of topics for the guidelines will be.

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

In order to gather input from around the world, the survey is available in three languages:

Participation is voluntary and valuable

Taking this survey is completely voluntary and you do not have to participate if you don’t want to. Your decision whether to participate will not affect your current or future relationship with any of the partner organizations. If you decide to take the survey and then change your mind later, you are free to withdraw at any time by simply exiting the survey (incomplete surveys are not counted).

Submitting your completed questionnaire is an indication of your consent to take the survey, and once you have submitted it, your responses cannot be withdrawn because they are anonymous and therefore KU Medical Center will not be able to tell which ones are yours. All of the responses will be summarized and reported together.

Consider this your invitation to add your voice, if you are one of the stakeholders listed above!

The deadline for survey completion is August 5, 2018.

Note: this survey has been approved in accordance with the University of Kansas Medical Center IRB policy. More information about this policy can be found here. This survey is being conducted using Survey Monkey, an online survey tool and database.

If you have any questions or concerns, please contact the WFH at [email protected] or Robin Arnold from the University of Kansas Medical Center at [email protected].

The input of stakeholders on which topics these guidelines should focus on is extremely valuable. The WFH thanks in advance all those who complete the survey for providing this important information, and those who share it for helping to gather representative information from the global community.