top of page
PRIMARY SCLEROSING CHOLANGITIS
PATIENT REGISTRY
Supported browsers: Chrome, Edge, and Safari
News and Announcements
Search
Now Available: Clinical Survey 2026
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
Jan 26
The Viaduct - Issue 9, Fall 2025
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
Sep 23, 2025


Meet the North Star Review Board!
In 2024, the Registry team sat down with the leadership at North Star Review Board, which serves as the independent review board (IRB)...
Sep 17, 2025


Registry Data on Access to Care Presented at Digestive Diseases Week
In May 2025, the annual Digestive Disease Week (DDW) conference was held in San Diego, California. This conference brings together...
Sep 17, 2025
Early Results from PSC and Cholangiocarcinoma (CCA) Survey Presented at European Meeting
The Precision BTC Network, a European-focused international coalition to improve care of biliary tract cancer (also referred to as CCA or...
Sep 17, 2025
bottom of page
