PSC Partners Seeking a Cure (PSC Partners), a patient-led non-profit organization supporting education and research in primary sclerosing cholangitis (PSC), announced today it has been awarded funding through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI), for a project titled “Building Capacity to Engage in Patient-Led Comparative Clinical Effectiveness Research in Patients with PSC at Risk for Cholangiocarcinoma.” This two-year project, launched in July 2026, will be coordinated in close collaboration with the Cholangiocarcinoma Foundation.

The award will enable a series of community engagement, educational, and capacity-building activities bringing together patients, caregivers, and clinicians to collaborate as equal partners in clinical research. By establishing a patient-led engagement infrastructure focused on cholangiocarcinoma (CCA) surveillance in PSC, this project lays the foundation for future clinical research evaluating new surveillance strategies. The organization’s broader strategic plan is to develop a patient-centered roadmap for CCA surveillance in PSC, with the eventual goal of updating clinical guidelines and care plans.

Cholangiocarcinoma is the most common cancer in PSC and the leading cause of PSC-related mortality. Despite recent advances in CCA surveillance, significant gaps remain in understanding how newer approaches compare with current standards of care and the optimal implementation into routine clinical practice. “For many families affected by PSC, the uncertainty surrounding cholangiocarcinoma is one of the greatest sources of anxiety,” said Ricky Safer, founder and Chief Executive Officer of PSC Partners. “This award gives us the opportunity to bring the patient and scientific communities together to prioritize the clinical research questions that matter most, and build the partnerships needed to answer them,” said Stephen Rossi, PharmD, Chief Scientific Officer of PSC Partners.

The Cholangiocarcinoma Foundation will serve as a key collaborator, bringing the perspectives and priorities of individuals living with CCA. Dr. Donna Evon, Professor in the Division of GI and Hepatology at the University of North Carolina at Chapel Hill will contribute expertise to support the key patient engagement activities. “The challenges surrounding cholangiocarcinoma cannot be solved by any one organization or discipline alone,” said Dr. Juan Valle, Chief Medical Officer of the Cholangiocarcinoma Foundation. “By combining the lived experiences of the PSC and CCA communities with clinical and research expertise, we can establish research priorities that catalyze scientific progress and ensure clinical impact. We are honored to join PSC Partners in this important effort.”

Numerous community engagement opportunities will be available throughout the project, including participation in listening sessions, focus groups, online surveys, and educational events. PSC patients (with or without CCA), caregivers, and relatives interested in participating are encouraged to join the mailing list at pscpartners.org/psc-cca-research

About PSC Partners Seeking a Cure:

PSC Partners Seeking a Cure is a 501(c)(3) nonprofit dedicated to funding research to discover treatments and a cure for PSC. Founded in 2005, the organization supports patients, caregivers, and families through education, advocacy, and community connection while advancing scientific progress through its research grants and patient registry. With a global network of more than 35,000 patients, PSC Partners collaborates with leading clinicians, researchers, and the patient community to improve outcomes and drive toward a cure. For more information, visit www.pscpartners.org

About the Cholangiocarcinoma Foundation:

The Cholangiocarcinoma Foundation’s mission is to find a cure and improve the quality of life for those affected by CCA. Founded in 2006, the organization has grown to become the leading global resource in research, education, and public awareness. The Cholangiocarcinoma Foundation provides trusted educational resources, personalized patient navigation, support groups, advocacy initiatives, including in-person annual conferences and symposia, and research funding. The Foundation also convenes leading scientists and clinicians to accelerate collaboration and drive discoveries that improve outcomes for people living with cholangiocarcinoma. For more information, visit curecca.org

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