News and Announcements

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

On February 4, 2026, the initial study details for Ipsen’s Phase 3 ELASCOPE clinical trial for elafibranor for treatment of PSC were listed on ClinicalTrials.gov . Study enrollment is anticipated to start around April 2026 and key details of the study design are now available. “PSC Partners is thrilled to see Ipsen move forward with this global Phase III study,” said Ricky Safer, Founder and CEO of PSC Partners. “This is a key step forward in fulfilling our mission of findi

Dear Registry Community, 2025 has been a banner year for the Patient Registry. Between important new surveys, Registry-led publications, external research support, and the launch of Spanish and French translations, the Registry is reaching ever greater heights. At the heart of the Registry’s success, making everything we do possible, is your active participation in the Registry. With 223 new participants in 2025, the Registry now represents over 2,770 people living with PSC f

In Spring 2025, the Registry, in collaboration with PSC Support , conducted the PSC and Cholangiocarcinoma (CCA) Patient Survey. This multinational survey collected information on current practices of monitoring for CCA (also known as bile duct cancer), educational resources used by patients, and communication between patients and providers regarding CCA. Results from the survey were presented at AASLD’s The Liver Meeting 2025 in Washington, DC. With 623 responses in just 7