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.
