The first webinar of the 4th WFH Gene Therapy Round Table (GTRT) was held in March, and covered the decision-making process for people with hemophilia who choose to receive gene therapy. The event explored many topics of interest to the community, such as:
- Decision-making through the nurses’ perspective
- The Patient preferences to Assess Value IN Gene therapies (PAVING) study, which examined key patient attributes that are important when making a decision
- The Exigency study, which provided insight on why some people with hemophilia have no interest in gene therapy
- Different perspectives on gene therapy based on different resource settings—specifically looking at how the resources available in a country affect perspectives
The thought-provoking presentations raised questions about educational needs, patient preferences, identity, risk tolerance and more. Three people with hemophilia who received gene therapy described their personal experience of participating in a clinical trial, including their decision-making process, and their experience in the year following infusion.
Discussions on topics related to shared decision-making took place during the second half of the webinar, which will inform the development of a shared decision-making tool for people with hemophilia and health care professionals considering gene therapy.
The upcoming June and September WFH Gene Therapy Round Table webinars will continue the conversation on current global developments, and the expected challenges related to gene therapy for hemophilia.