News and Announcements

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

The Registry team is thrilled to announce that the Registry is now available in Spanish and French languages. Surveys, informed consent forms, and all other features are available in Spanish and French .  This includes much of the general information on the Registry available at pscpartnersregistry.org . ACCESSING THE TRANSLATIONS From pscpartnersregistry.org , you can access translations by selecting the flag icon at the top of the webpage or within the page menu (on mobile)

The new Clinical Survey 2026 was just released and is available in your Registry account. Have you ever wondered why the Registry updates this survey every year and why we request that you update it annually? What’s new?  In the Clinical Survey 2026, you will find changes and additions to the Symptoms section. These updates include questions developed by the PSC Partners’ Symptom Assessment Project  (SAP) team and asked in the recent Symptom Assessment Survey (now closed). Th

Living with PSC, Leading with Hope You might notice this issue of The Viaduct  has a new look, in more ways than one! As your new Registry director, it is my honor to serve you in fulfilling the Registry’s mission to facilitate, expedite, and advance patient-centered research towards treatments and a cure for PSC. When I was diagnosed with PSC, I felt the same as many of you did: hopeless, uncertain, fearful. As I pored over medical websites, papers, and personal stories, two

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

Today, March 27, 2025, Chemomab Therapeutics issued a press release announcing results from the Open Label Extension (OLE) section of the SPRING trial, which offered SPRING participants the opportunity to receive nebokitug (CM-101) for an additional 33 weeks (up to 48 weeks of exposure to nebokitug).  PSC Partners is encouraged by the positive nebokitug OLE data shared in the press release. Key takeaways from the press release that are important to patients: More than 90% of

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. The full press release is available on the Chemomab website.  The investigational drug being tested has been named nebokitug, previously studied in PSC in the SPRING Study as CM-101. PSC Partners is encouraged by the news that a potential drug for PSC is moving forward into the final stages of the drug approval process (Phase 3 clinical

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 • Registry Data Presented at TLM • Your Powerful Impact • PSC Partners Registry and Other Registries From the Registry Director Dear Registry Participants, This has been an incredibly fruitful year for the Registry. Between a move to the new and improved Registry platform, several publications making use of Registry data, and the launch of two ne

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...