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 new surveys, the Registry is more active than ever before! With so much coming out from the Registry, the VIADUCT will be published more frequently next year.
I look forward to the Registry continuing this growth in 2025. Be on the lookout for a new 2025 Clinical Survey launching on January 2. If you haven't yet logged into the new platform, or completed the 2024 survey, you've got a few days to get to it before the next survey launches! To best capture changes over time, it’s recommended to wait at least 6 months since completing your last annual survey. You will receive a reminder when it’s the ideal time to take the 2025 Clinical Survey.
Thank you for your continued support and engagement with the Registry. By logging in, completing any available surveys, and updating your information when needed, you directly support PSC research and center the patient voice in the path towards a cure for PSC.
Kind regards, Rachel Gomel and the Registry Team
A New Era for the PSC Partners Registry Community
2024 has been a big year for the PSC Partners Patient Registry, which celebrated the 10th anniversary of its initial opening and the March launch of an upgraded data platform. Click the "READ MORE" button below to learn about the upgraded Registry site.
Driving Research: Your Data in Publication - 2024
Thanks to your active participation in the Registry, significant progress has been made in PSC research. Four publications using Registry data were released in 2024. Topics include improving patient-centered clinical trial development, special considerations of pediatric PSC patients, and better understanding PSC-related fatigue and cholangitis.
Clinical Trial News Announced at PSC Partners Annual Conference
The 20th Anniversary PSC Partners Annual Conference took place in Phoenix, Arizona, on October 18-20, 2024. The "Industry Updates: Ongoing PSC Clinical Trials" general session featured reports by pharmaceutical representatives about several trials. A few weeks later, more late-breaking news came from The Liver Meeting, held in San Diego, California by the American Association for the Study of Liver Diseases (AASLD).
Registry Data Presented at PSC Forum and AASLD's The Liver Meeting
In November, a PSC Partners contingent, representing both the U.S. and Canada, attended the 8th PSC Forum and the AASLD's The Liver Meeting (TLM). Two current PSC Partners research projects were discussed at the PSC Forum, and two posters that included your (de-identified) patient data were presented at TLM.
Your Powerful Impact
PSC Partners opened the Patient Registry for enrollment 10 years ago. However, the process of building a Registry began several years before its 2014 launch. From a 2012 pilot program with the NIH to a “gold mine” for PSC research and accelerating drug development, the Registry has grown far beyond what was once thought possible for patient-led research initiatives.
PSC Partners Registry and Other Registries: An Example of Different Types of Registries
This past July, the American Liver Foundation (ALF) announced the opening of a new patient registry. While similar in function and structure, the ALF has different goals and eligibility requirements compared to the PSC Partners Patient Registry. PSC patients are encouraged to join all registries for which they qualify! Learn more about the new ALF registry and how the two registries differ.
Snapshot of Registry Data
Established in collaboration with the Office of Rare Diseases Research (ORDR), the National Center for Advancing Translational Sciences (NCATS), and the National Institutes of Health (NIH)
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