News and Announcements

In January, PSC Partners welcomed Assistant Registry Director Fernanda Quevedo as the newest member of the Registry team. She has extensive experience in research and research coordination and will be involved broadly in the work of the Registry. Fernanda holds a bachelor’s degree in neuroscience, with a minor in psychology, from the University of Texas at Austin. During her time there, she conducted research in pre-clinical studies of post-traumatic stress disorder (PTSD). M

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

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