Research Grants Program
We encourage all grant applicants - including those in basic science or preclinical research - to meaningfully integrate patient partnership into their work.
Every application is scored by both a Scientific Review Committee and a Community Review Committee, with equal weight given to each. We assess not only scientific rigor, but also the extent to which projects engage the PSC community meaningfully.
WIND-PSC
This international, multi-center cohort study - entirely planned, financed, and overseen by PSC Partners - collects real-world data to support clinical trial readiness.
Recruitment is underway at multiple sites in North America and Europe. WIND-PSC was carefully designed around PSC patients’ standard of care to minimize additional burden for participants.
PSC Symptom Assessment Project (SAP)
Guided by patient-identified symptom priorities like brain fog, fatigue, and liver pain, this project is developing the first PSC-specific symptom measurement tool. Patients participate as advisors, interviewees, and co-creators.
International Collaborative Research Network (ICRN)
Through working groups co-led by researchers and community members (patients, relatives, and caregivers), the ICRN develops research proposals grounded in community priorities. PSC Partners first ICRN-funded project was chosen through a collaborative review process with input from 235 community members.
The Patient Registry
With 18 research publications and multiple ongoing global surveys, our registry captures the PSC experience across the full disease journey. All data is de-identified and HIPAA-compliant, and patient input drives every new survey we launch.
Patient Experience Surveys
Patient experience surveys are developed and distributed in collaboration with the PSC Partners Patient Registry and with global PSC organizations. Two recent examples that addressed emergent community topics included global acute cholangitis and cholangiocarcinoma surveys.
