Patient Registry

Patient Registry: Call for Research Collaborators

Are you a researcher looking to better understand the experiences of people living with PSC? The PSC Partners Patient Registry contains 11 years of patient-reported data representing 2,700 people living with PSC from 55 different countries. The Registry supports PSC research through:

1. Sharing of de-identified participant data for approved research.
2. Confidential recruitment for approved external studies or surveys.

With over 2,000 surveys completed in 2025 alone, now is a better time than ever to partner with this thriving, patient-driven community. Learn more about how you can collaborate with the Registry to accelerate PSC research.

Questions? Contact registryresearch@pscpartners.org.

• The PSC Partners Patient Registry gathers PSC patient-reported data to support research on patient experiences, recruit for and facilitate clinical trials, and provide a platform for patient surveys. 
• The Registry serves as a valuable, adaptable, and agile tool that ​readily responds to pressing research questions and fills research gaps.
• 2700+ patients from 54 countries are currently participating.
• The team is also designing new surveys—such as one focused on post-transplant experiences.
• The PSC Partners research team is analyzing Registry data to produce our own publications that will address critical, understudied questions in PSC care.