This project will assess the patient-centered research priorities of individuals living with pseudoxanthoma elasticum (PXE) and their families. The disease is not well understood, and while it mimics a number of common conditions, it has no specific treatments. Families, clinicians, and researchers will work together to establish priorities and proceed through a series of steps to prioritize research questions. The process will then be scrutinized and improved by leaders from a number of disease advocacy organizations, resulting in a workshop to refine and disseminate learnings to create a customizable template for this process in other communities.
The projected output from this project is a PCOR agenda for PXE International and a guide so that other organizations can efficiently engage their communities to the same end goal.
Project collaborators include Participant Advisory Group members; methodology experts; disease advocacy organization leaders; Genetic Alliance; and an IRB Chairperson.
Project Resource: PXE Conference Agenda