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Site Maintenance News for Those Wishing to Join the Registry

If you’re reading this message, it is because you expressed interest in joining the PSC Partners Patient Registry. We would like to inform you that the Registry is temporarily closed for maintenance.

Please let us know you visited by mailing us at so that we can communicate with you and let you know as soon as the Registry reopens and is ready for you to join.

The Registry started with a single survey. New surveys were added to answer specific research questions aiming to uncover the preferences, needs, and challenges facing people living with PSC. The maintenance currently being implemented in the Registry will provide a richer experience for participants and create tools that will prepare the Registry for more and bigger research.

While access to joining the Registry and taking surveys is temporarily closed, you have complete access to the many resources on the Registry website at These resources are updated as new information comes in.

You have access to:

We don’t want to lose you! Each participant brings a wealth of knowledge on their unique journey with PSC. Don’t forget to email us!

Together, we are creating a world where a PSC diagnosis comes with a cure!

The Registry Team

Rachel Gomel, Registry Director
Sharon Nanz, Registry Curator/Coordinator
Mary Vyas, Registry Strategist
Susan O’Dell, Registry Analyst

November 22, 2023

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