The PSC Symptom Assessment Project (SAP) is a patient-partnered initiative led by PSC Partners to develop PSC-specific Patient-Reported Outcome (PRO) measures for potential use as validated clinical trial endpoints.
Through ROADMAP and multiple focus groups, PSC Partners identified key PSC symptoms—fatigue, brain fog, and liver pain—that lack valid and reliable instruments.
Lead investigators Dr. Donna Evon (UNC) and Bryce Reeve (Duke) have been working on developing PRO tools for the above PSC symptoms to understand patients’ in-depth experiences living with these symptoms and to evaluate if the symptoms change over time and during treatment trials.
The PRO measures are nearly finalized and will soon be distributed via a PSC Partners Registry survey—marking a key milestone in their path toward clinical trial readiness.
This survey will gather responses from a broad PSC patient population, a critical step in validating these tools for future use in clinical trials.
