News and Announcements

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 to

In May-June 2026, the EASL International Liver Congress was held in Barcelona, Spain. This annual meeting brings together researchers, clinicians, industry, patient organizations, and others from the field of hepatology to connect on the latest news and research. Two posters presented at the meeting highlight research conducted by the Registry or with Registry support (study development and recruitment). Burden of Illness in PSC Access the full abstract and poster here. An in

The DoLPHin Study is an 8-week pilot study in the U.S., led by the Resnek Family Center for PSC Research at Brigham and Women's Hospital, testing the efficacy of a drug called hydroxocobalamin as a treatment for patients with PSC. All the study visits will take place remotely, and blood will be drawn by a research nurse who will visit the trial participants in their home. The study team is looking to enroll adults 18 and over with PSC who have high alkaline phosphatase levels

Dear Registry Community, This spring marks a truly exciting moment for PSC. New treatments for PSC, once considered a distant possibility, are closer than ever before. In the U.S., the successful Phase 2b trial for volixibat to treat itch will hopefully lead to a New Drug Application for FDA review later this year. In Europe, norucholic acid was submitted for European marketing approval last August following a successful Phase 3 trial. The new global Phase 3 trial for elafibr

A new survey focusing on the impact of cholecystectomy (gallbladder removal surgery) on the course and outcomes of PSC is now available in the Registry. To effectively compare outcomes, this survey is open to ALL Registry participants; Whether you HAVE or HAVE NOT had your gallbladder removed Whether you HAVE or HAVE NOT had a liver transplant (a major outcome to study) Caregivers can fill out this survey on behalf of their loved ones with PSC. This survey was developed by PS