PRIMARY SCLEROSING CHOLANGITIS
PATIENT REGISTRY
Supported browsers: Chrome, Edge, and Safari
PSC Registry Overview for Researchers
At a Glance
2,700
Participants from 54 countries
6,500
Completed surveys
23
Publications made possible through Registry data and recruitment
as of November 2025
Research Partnerships
DATA SHARING
Aggregate or de-identified individual-level Registry data can be provided for approved research. Additional questionnaires can be sent to participants if needed.
STUDY RECRUITMENT
The Registry emails info on clinical trials and other studies to patients matching the criteria. For confidentiality, it is up to the patient to contact the investigators.
For more details, read the Registry's Data Access Policy.
Patient Voices in Action
Source: Stephen Rossi et al. "Defining Acute Cholangitis as a Clinical Outcomes Endpoint in Adults with Primary Sclerosing Cholangitis"
Source: Michael Li et al. "The Externally-Led Patient-Focused Drug Development Meeting for Primary Sclerosing Cholangitis: Insights on Patient Involvement in Clinical Trials"
Current Registry Surveys
To date, de-identified survey data has been used in 19 publications. Links and more information can be found on the Registry Impact page.
Clinical Survey: This annual survey collects core medical information, family history, current symptoms, medications, and more. With 11 years of data, and this provides a rich data set for analysis, and is used to pre-screen for clinical trial recruitment messages.
​
Health Equity in PSC: This survey collects additional demographic data and information about access to medical care. It also measures patients' confidence in and satisfaction with their care.​
​
Acute Cholangitis: Patient history, symptom course, and care received during most recent flare/cholangitis episode are collected in this survey.
​
PSC & Cholangiocarcinoma (CCA): This survey elicits patient experience surrounding monitoring for CCA, awareness of and education about CCA, and discussion with their clinicians about CCA.
​
Symptom Assessment: This survey is part of the Symptom Assessment Project, a PSC Partners initiative to develop fatigue, cognitive impairment, and liver pain PRO measures for potential use as clinical trial endpoints.​​ The goal of this survey is to support validation of the PRO instruments in a real-world cohort.
​
​
Past surveys include the Our Voices Survey, the results of which were presented to the FDA at the Patient-Focused Drug Development Forum for PSC; the PSC-specific COVID-19 Survey; the Oral Vancomycin and Insurance Survey, which helped inform a legislative advocacy effort; and the external RAND Health SF-36 quality-of-life measure.
Clinicians help the Registry grow!
Patients often learn of the Registry through their doctor. It is an easy and secure way for all with PSC to help advance PSC research, whether pre- or post-transplant. Caregivers can join on behalf of children or adults with PSC (adults must consent). We encourage you to discuss the Registry with your patients. Informational materials including brochures, flyers, and posters are available upon request.
