“Under construction” – Post-Transplant Survey

This spring, the Registry team reached out to the PSC community seeking input about a new post-transplant survey we are planning. Patient perspective is key to all projects at PSC Partners, and we greatly appreciate the 132 responses we received. The survey is under development based on your input alongside leading researchers.

One of the goals of this new survey is to actively engage the Registry’s post-transplant participants, who have much to offer researchers exploring topics such as risk factors for recurrent PSC or post-transplant complications. The survey will also collect information about waitlist and transplant experiences.

One respondent to the earlier community input survey wrote, "Despite complications with my transplant, the whole process has been such a positive experience that I would happily [share] anything related to it." Whatever your own experience has been, if you are post-transplant, you are invited to complete the post-transplant survey when it is released later this year. Your input is valuable!

IMPORTANT: If you are post-transplant and have not completed the Clinical Survey 2026, please do so. As well as health history, the CS2026 captures transplant status, which is how we determine who should receive the post-transplant survey when it is released.