LOGIN - Account Profiles and Surveys Undergoing Maintenance
If you’re reading this message, you have attempted to login to your account on the PSC Partners Patient Registry. Account profiles and surveys are undergoing maintenance.
We are in the midst of updating and improving the Registry to provide a richer experience for you and to create tools to prepare your de-identified data for more and bigger research. While access to surveys is temporarily closed, you still have access to the updated resources on the Registry webpage at pscpartnersregistry.org.
The Registry started with a single survey (the Clinical Survey), and as the need arose to find out about the preferences, needs, and challenges facing people living with PSC, specific surveys were added to answer specific research questions.
In order to optimize the precious data that you have provided, we are continuing to upgrade the Registry and are very excited about the new features that will be available to you soon! For now, the Registry is closed for upgrade maintenance.
You have access to:
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The Registry newsletter The Viaduct
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The global physician map (physicians treating Registry participants)
As a Registry participant, you will still receive messages into your inbox for clinical trial opportunities and the Viaduct newsletter. We will also alert you when the upgraded Registry site is ready for you to visit and explore the new features.
Each participant is a wealth of knowledge on their unique journey with PSC. Together, we are creating a world where a PSC diagnosis comes with a cure. Stay tuned!
The Registry Team
Rachel Gomel, Registry Director
Sharon Nanz, Registry Curator/Coordinator
Mary Vyas, Registry Strategist
Susan O’Dell, Registry Analyst
November 22, 2023