News and Announcements

A new survey focusing on the impact of cholecystectomy (gallbladder removal surgery) on the course and outcomes of PSC is now available in the Registry. To effectively compare outcomes, this survey is open to ALL Registry participants; Whether you HAVE or HAVE NOT had your gallbladder removed Whether you HAVE or HAVE NOT had a liver transplant (a major outcome to study) Caregivers can fill out this survey on behalf of their loved ones with PSC. This survey was developed by PS

On February 4, 2026, the initial study details for Ipsen’s Phase 3 ELASCOPE clinical trial for elafibranor for treatment of PSC  were listed on ClinicalTrials.gov . Study enrollment is anticipated to start around April 2026 and key details of the study design are now available. “PSC Partners is thrilled to see Ipsen move forward with this global Phase III study,” said Ricky Safer, Founder and CEO of PSC Partners. “This is a key step forward in fulfilling our mission of findi

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

In Spring 2025, the Registry, in collaboration with PSC Support , conducted the PSC and Cholangiocarcinoma (CCA) Patient Survey. This multinational 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 in Washington, DC. With 623 responses in just 7

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