Exploring Decision-Making about Participation in an Industry-Sponsored in vivo Gene Therapy Clinical Trial for Fabry Disease

Conducting qualitative interviews with adults who made a decision about participating in an industry-sponsored gene therapy (GT) clinical trial for Fabry disease, the research team will seek to add to our understanding of GT trial decision-making novel insights concerning 1) industry-sponsored GT trials, 2) GT trials for conditions for which approved treatment options exist, and 3) alignment between participants’ initial understandings/perceptions and their experience. The research team’s long-term goal is to develop evidence-based recommendations for supporting patient decision-making and informed consent in GT trials.