News and Announcements

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

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

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

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

Issue 6 - June 2023 In this issue: From the Registry Director • New CZI Grant Awarded to PSC Partners • Patient Focus Groups Provide Feedback • Oral Vancomycin & Insurance Coverage • European Clinicians Survey Results • Call to Action: What is the Registry Not Asking? • Highlights: Clinical Trials & Studies From the Registry Director Dear Registry Participants, PSC Partners and the PSC Partners Patient Registry are moving at rapid speed through involvement in large internatio

Issue 5 - October 2022 Welcome! In this issue:  • From the Registry Director • The Clinical Trial Landscape in PSC • Current International PSC Research • The ChiLDRen Study • Gilead's PRIMUS Trial Terminated •  Patient-friendly Clinical Trial Design • Highlights of the 2022 International Liver Congress • Meet PSCP's Ruth-Anne Pai, PhD •  Clinical Trials Are Recruiting From the Registry Director Dear Registry Participants, Whether you are a person living with PSC, or the relat

In this issue: •  From the Registry Director • Mini-PFDDs • Patient Registry Video Tour • Help Us Grow & Diversify the Registry! • PSC Partners WIND Natural History Project • ROADMAP Wrap-up • PSC Research: Collaborative Efforts From the Registry Director Dear Registry Participants, Excitement is mounting as we approach the 18th PSC Partners Annual Conference, which is being planned in collaboration with Brigham and Women's and Massachusetts General hospitals (Harvard Univers

Welcome! In this issue: • From the Registry Director • Profile: Dr. Frank Anania of the FDA • Your Registry Data at Work • PSC Partners Poster Presentation: AASLD Liver Meeting, Nov. 2021 • Three Clinical Trials Currently Recruiting • Three Minutes with Frank Sasinowski • AASLD Patient Track Recap • Update on the ROADMAP Initiative From the Registry Director   Dear Registry Participant, The holidays are here and, once again, COVID-19 is affecting our lives in many different

Dear Registry Participant, Thank you for your participation in the PSC Partners Patient Registry. We are happy to bring the second issue of The VIADUCT to you! Email us at any time with your feedback, input or questions at  registrycoordinator@pscpartners.org . In this issue: From the Registry Director: Moving Research Forward Clinical Trials: Stay informed with Registry Resources | Fred Sabernick Shares His First-Hand Experience Boston: An Emerging Hub for PSC Research Home