News and Announcements

Issue 8 - Spring 2025 In this issue: From the Registry Director • Cholangiocarcinoma (CCA) Survey • WIND-PSC Enrolling Patients •...

More participants are needed for the following drug trials to move forward. Please reach out to the Brigham and Women’s researchers...

Members of the WIND-PSC project, including the steering committee, staff, and investigators from several of the sites currently enrolling...

Quotes from interviews of patients living with PSC describing their fatigue, presented as a poster at AASLD's The Liver Meeting 2024 ....

Today, March 27, 2025, Chemomab Therapeutics issued a press release announcing results from the Open Label Extension (OLE) section of the...

A new survey outside the Registry that focuses on understanding and improving the care of people living with PSC is now available. Every...

On February 19, 2025, Chemomab Therapeutics issued a press release announcing plans for a Phase 3 clinical trial for the treatment of PSC....

A new survey on PSC and diet is available through the European Reference Network (ERN) and open to people living with PSC around the...

Issue 7 - Winter 2025 In this issue: From the Registry Director • A New Era • Your Data in Publication - 2024 • Clinical Trial News •...

This past July, the American Liver Foundation (ALF) announced the opening of a new patient registry. You may be wondering how it compares...

PSC Partners opened the Patient Registry for enrollment 10 years ago. However, the process of building a Registry began several years...

In November, a PSC Partners contingent, representing both the U.S. and Canada, attended the 8th PSC Forum and the American Association...

The 20th Anniversary PSC Partners Annual Conference took place in Phoenix, Arizona, on October 18-20, 2024. Throughout the conference...

Thanks to your active participation in the Registry, significant progress has been made in PSC research. Four publications using Registry...

A new survey is available in the Registry: the PSC Flare or Cholangitis Attack Patient Survey . Why take a survey about PSC...

A huge THANK YOU! to everyone who has kept the PSC Partners Patient Registry an active and constantly growing beacon of the patient voice...

Three Recent Announcements from: Pliant, NGM, and Chemomab PSC Partners is encouraged by the initial positive data from the CM-101 Phase...

On July 15, 2024, Pliant Therapeutics announced positive results from their Phase 2a INTEGRIS-PSC trial for bexotegrast in treatment of...

The repurposing of approved medications with potential new efficacy in rare diseases is challenging, as these medications are unlikely to...

The following is a message from Mirum Pharmaceuticals regarding their VISTAS study for volixibat, a possible new treatment for...