The Viaduct - Issue 10, Winter 2026
- 2 days ago
- 2 min read
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 from 55 countries. And with 2,083 surveys completed last year alone (more than double the previous year!), your voice is heard loud and clear. Your contributions to research are invaluable, and we will ensure that all the information you have shared will tangibly drive research forward.
Looking ahead to 2026, we aim to further expand the Registry’s global reach and to bring the insights made possible by your data into new publications, which will be shared back with the community. You can also look forward to a new survey launching later this year to capture transplant and post-transplant experiences.
On behalf of the Registry team, we wish you all good health and good care in 2026. May this year continue to bring us ever closer to a cure for PSC.
- Brian Thorsen, Director, PSC Partners Patient Registry
Meet our New Assistant Director
Assistant Registry Director Fernanda Quevedo joined the Patient Registry Team in early January, but she is not new to PSC research. Her work experience includes several years as the research program/project manager at the Resnek Family Center for PSC Research at Brigham and Women’s Hospital in Boston, Massachusetts, where she worked with Dr. Joshua Korzenik and his team.
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?
New Language Support: Spanish and French
We are excited to announce that key parts of the Registry’s internal data platform, including most current surveys, are now available in Spanish and French. In addition, the public website also includes newly translated sections. With these translations, the Registry improves its global access and representation for those with PSC.
Cholangiocarcinoma (CCA) Survey Results
In Spring 2025, the Registry conducted the PSC and Cholangiocarcinoma (CCA) Patient Survey. This survey collected information on current practices of monitoring for CCA (also known as bile duct cancer), educational resources used by patients, and communication between patients and providers regarding CCA. Results from the survey were presented at AASLD’s The Liver Meeting 2025.
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