News and Announcements

On September 8, 2025, Mirum Pharmaceuticals Inc. issued a press release announcing enrollment completion for the Phase 2b VISTAS study. This clinical trial is studying volixibat versus placebo to treat pruritus (itch) associated with PSC. Volixibat works by reducing bile acids in the blood, which may decrease the frequency and severity of pruritus. The VISTAS study targeted an enrollment of 200 adult and pediatric (12 years and older) participants living with PSC. Earlier bli

Dear PSC Registry Community, It is time for me to leave my position of Director of the PSC Partners Patient Registry. As founder of the...

The Registry team is excited to announce that a new Symptom Assessment Survey is now available in the Registry. Developed by the PSC...

In May 2025, the European Association for Study of the Liver (EASL) hosted its annual congress in Amsterdam, Netherlands. Late-breaking oral presentations on potential treatments for PSC featured results from two clinical trials: Dr. Falk Pharma: Norucholic acid for the treatment of primary sclerosing cholangitis: 96-week analysis of a pivotal phase 3 trial , presented by Michael Trauner Ipsen Pharmaceuticals: Elafibranor for primary sclerosing cholangitis: the ELMWOOD phase

Issue 8 - Spring 2025 In this issue: From the Registry Director • Cholangiocarcinoma (CCA) Survey • WIND-PSC Enrolling Patients • Clinical Trial News • External Studies and Surveys • Symptom Assessment Project • Registry Superstars • Learning from Registry Data From the Registry Director Rachel Gomel (left) and Mary P Vyas (right) Dear Registry Community, Sixteen years have gone by since the PSC Partners Patient Registry was just a lofty idea, a dream I believed could turn in