$13.6 Million PCORI Award Highlights Value of Patient-Led Research into PSC Symptoms

A major research study is bringing new focus to symptom management and mental health support in rare liver disease.

Dr Donna Evon and her team at the University of North Carolina at Chapel Hill(opens in new tab) have been awarded $13.6 million by the Patient-Centered Outcomes Research Institute (PCORI)(opens in new tab) for a 60-month clinical trial. The study will evaluate whether an online digital health wellness platform can help people with primary sclerosing cholangitis (PSC) or primary biliary cholangitis (PBC)(opens in new tab) manage distress and symptoms like fatigue, sleep disturbance, and pain.

What is the EMPOWER study?

Living with PSC or PBC involves managing unpredictable daily symptoms that impact physical and emotional wellbeing. Building on prior research(opens in new tab) showing that the online EMPOWER digital health platform improved stress and mental health, this new trial addresses a key gap identified by patient feedback: the need for live peer and clinician support. The trial compares EMPOWER alone against EMPOWER paired with clinician-led group therapy to see if live support yields greater mental health improvements.

While this trial takes place in the US, a successful outcome will pave the way for a framework that could be replicated across the UK and Europe.

How does patient involvement shape research?

Patient and Public Involvement and Engagement (PPIE) is central to high-impact clinical trial design. By embedding the lived experience of people affected by PSC, researchers ensure that trials prioritize outcomes that directly affect quality of life. PSC Support is proud that patient input helped shape this important study.

How to join our Patient Panel Pool?

PSC Support invites people living with PSC and their close family members to share their views and shape future studies. Members of the Patient Panel Pool(opens in new tab) support research by taking part in focus groups, reviewing research documents, and many other activities to ensure research reflects real patient priorities.