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.
Over 2,500 patients from 56 countries are currently participating.
The Registry is expanding its global reach with Spanish and French translations, and rolling out enhanced features including symptom tracking, medication logging, and electronic health record (EHR) integration.
The team is also designing new surveys—such as one focused on post-transplant experiences.
The PSC Partners research team is planning to analyze Registry data to produce our own publications that will address critical, understudied questions in PSC care.
