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The Registry is holding drawings for 3 $100 gift cards! Join, update info, or complete surveys by 8/31 to enter. Click here for more details.

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Help reach the Registry's goal of 200 new participants and 500 newly completed surveys
by Aug 31!

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New Participants: 142

Completed Surveys: 262

Current Progress:

Last updated: July 15

What is the PSC Partners Patient Registry? What can I expect after I join?

Join the registry to add your information to our collective voice.

Interactive map of healthcare providers provided by PSC Partners Patient Registry participants.

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.

Take Part in PSC Research!

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Together We Can Help Solve the PSC Puzzle

If you have PSC, wherever you are in the world, you can join the PSC Partners Patient Registry. Parents can join for their children.

Our aim is to collect basic data on PSC patients; increase and accelerate research; advocate for the unmet needs of PSC patients; recruit for clinical trials in search of PSC treatments; and facilitate studies leading to a better understanding of PSC.

About the Registry and Patient Privacy

The PSC Partners Patient Registry was created in 2014 in collaboration with the National Institutes of Health (NIH) Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS).

Only de-identified data will be shared with researchers. To protect our registry community, the registry is annually reviewed by an Institutional Review Board (IRB).

 

You may 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.

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Every Profile Helps! Every Registry Helps!

Each registry profile adds to our body of knowledge. We learn where patients are located, what symptoms they are experiencing, and how they are being treated by their doctor.

All of this information is vital for better understanding the diversity of the PSC community and for planning clinical trials. A strength of this registry is that it has no borders, is not bound to a medical institution or a specific type of research. There are other PSC registries, and they each serve different purposes. Joining all established registries can accelerate research.

"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, and Brian Thorsen, webmaster

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