The Viaduct - Issue 9, Fall 2025
- PSC Partners Patient Registry
- Sep 23
- 3 min read
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 things became clear. First, there is wide variability in people’s experiences living with PSC. What may be true for one person doesn't hold for another. Second, there is a lot we don’t yet know about PSC. Eventually, I discovered the Registry, and it was immediately clear that this would be a key part to solving the PSC puzzle.
Each of us is affected by PSC in our own way. Your unique experience is a treasure trove of knowledge, and the Registry strives to make your voice heard clearly and fully. And yet, it is only through our unified voice that we can drive research forward. Everyone must add their piece of the puzzle to identify the underlying patterns and shine light on this complex disease.
Today, working with the incredible Registry team, reviewing the vast wealth of data you have helped contribute to, and connecting with the vibrant community, I am not just hopeful. I am certain that together, we will create a world where a PSC diagnosis comes with a cure.
- Brian Thorsen, Director, PSC Partners Patient Registry
Now Available: Symptom Assessment Survey
Developed by the PSC Partners Symptom Assessment Project, the Symptom Assessment Survey measures three major symptoms of PSC: fatigue, brain fog, and liver pain.
If you are an adult with PSC and have experienced ANY or ALL of these symptoms in the past seven days, whether your symptoms were mild or severe, please log into the Registry and take this important survey.
Cholangiocarcinoma (CCA) Surveillance and Education
In May 2025, Stephen Rossi, chief scientific officer at PSC Partners, presented initial results from the PSC and Cholangiocarcinoma (CCA) Patient Survey at a Precision BTC Network meeting focused on biomarker development for CCA diagnosis and management.
With 624 survey responses in just seven weeks, it is abundantly clear that this topic is of high importance to the community. Many thanks to all respondents, both from the Registry and from PSC Support (UK), who co-developed this survey.
Improving Access to Care
De-identified results from the Registry’s Health Equity in PSC Survey were presented in May 2025 at the annual Digestive Disease Week conference held in San Diego, California. The survey is currently active for Registry participants to complete. More responses are needed to better understand the wide range of backgrounds and experiences of people living with PSC.
Potential Treatments for PSC
In May 2025, major news came from the EASL Congress on two potential treatments for PSC. Read more or listen to a breakdown of the research in our new PSC Breaking News podcast.
Enrollment Complete for VISTAS Phase 2b Study
On September 8, 2025, Mirum Pharmaceuticals announced the completion of enrollment for the VISTAS study of volixibat versus placebo to treat pruritus (itch) associated with PSC.
PSC Partners is deeply grateful for every person living with PSC who chooses to participate in clinical trials, including this study. Your participation enables development of safe and effective treatments for PSC for all.
Meet the North Star Review Board
In 2024, the Registry Team sat down with the leadership at North Star Review Board, who serves as the independent review board (IRB) for the Registry. Learn more about their work and role in protecting participant rights and ensuring your safety and privacy.
Learning from Registry Data: PSC Symptoms
This chart was created using the most recent Clinical Survey responses from 2,222 Registry participants. There is significant overlap: on average, Registry participants have experienced 5.5 out of the 11 listed symptoms.
PSC often comes with a major symptom burden. Researchers are working to develop a more nuanced understanding of these symptoms and how to effectively measure changes over time. The Symptom Assessment Survey helps build this in-depth profile of key PSC symptoms.
Stay Connected with PSC Partners
Sign up to receive the information that matters most to you— from research and volunteer openings to our three e-newsletters:
The Beacon - new, scientific research newsletter providing a comprehensive look at how patient-driven research and donor contributions make an impact. Read the inaugural edition.
The Duct - the latest PSC news, updates and events
The Viaduct - Patient Registry news
