The Registry is a platform to amplify your voice in PSC research.
The PSC Partners Patient Registry is open to everyone with PSC, wherever you are in the world.
Parents and caregivers can join on behalf of their children.
​Any information you share is de-identified before sharing with researchers. No patient-identifying data ever leaves the Registry.
Join the Registry to...​
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Complete surveys that confidentially capture your experiences and address key questions in PSC research;
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Document and track your medical history with PSC, including treatments, symptoms, and healthcare providers;
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Elect to receive information about participating in research and clinical trials. You will be notified if you qualify for a study and can choose to contact the study team.​
Data is power
Thanks to people like you, the experience of living with PSC can be understood like never before. The more health information we collect through this patient registry, the closer we can get to helping our research community find treatments that work. Check out this video to learn more.
"Where well-implemented registries and active patient organizations exist, the likelihood for developing a treatment for the disease in question is increased." (Eurordis-NORD-CORD)
For questions, email registrycoordinator@pscpartners.org
Visit PSC Partners website: pscpartners.org
Join the Registry today! We're together in the fight, whatever it takes.
With appreciation to Espen Bunæs for design support