Patient-Reported Outcomes (PROs) are how patients describe their symptoms, daily limitations, and quality of life — in their own words.
Patient-Reported Outcome Measures (PROMs) are tools or questionnaires that measure those experiences in a structured, scientific way. PROMs turn lived experience into data that clinicians and researchers can use.
Why this matters for PSC
PROMs are already used today for treatment approvals when they are disease-specific and validated. However, generic PROMs miss PSC realities, especially the impact of fatigue, brain fog, and liver pain.
PSC-specific PROMs bridge the gap by
- Capturing key symptoms accurately
- Reflecting patient experiences in both research and clinical care
- Providing meaningful, patient-centered endpoints for clinical trials
- Enhancing communication between patients and clinicians
