Welcome to the PSC Partners Patient Registry!

This site was developed and is supported by PSC Partners Seeking a Cure, a nonprofit organization dedicated to providing education and support to PSC patients, families, and caregivers. Another vital mission of PSC Partners is to support researchers in their quest to find causes, treatments, and cures for this rare disease.

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The PSC Partners Patient Registry was initiated in 2014 in response to the difficulty of locating PSC patients and collecting PSC data to conduct research on our rare disease. Our aim with the Registry has been to add the patient’s voice to every facet of PSC research and to facilitate and speed up PSC research towards a cure.

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All those diagnosed with PSC are encouraged to participate. Parents can join the Registry to enroll their child. A spouse can participate on behalf of their partner. All data in the Patient Registry is de-identified. When a researcher requests information, no identifying information (name, date of birth, address, or phone number) ever leaves the Registry.

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Researchers, approved by the PSC Partners Patient Registry Team, request de-identified registry data for their research, for patient recruitment in clinical trials, and for developing clinical study protocols.

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Participants of the PSC Partners Patient Registry represent an important voice of the PSC community: They engage in research by completing surveys and joining clinical trials. They help us advocate by expressing their unmet needs. When new treatments arrive, the Registry can help track the effectiveness of the new drug and can speed up drug approval.

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If you or your child appears to be a match for a study or a clinical trial, the registry coordinator will contact you. It would be your choice to connect with the researcher(s) to let them know if you are interested.

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To join, we request that you enter your General Information, give consent, complete the Clinical Survey, and that you provide a proof of diagnosis which could be a recent or old MRCP or ERCP result, or a doctor’s report that states you have PSC.

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You can learn more about the specifics of the registry by clicking on the various links on this site.

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We hope you will be inspired to join the PSC Partners Patient Registry. Your voice is crucial for this small and dispersed PSC community! You can help researchers worldwide by taking around 30 minutes of your time to complete your profile -  or your child’s or loved one’s profile. Join the hundreds of men, women, and children who are helping to advance PSC research towards treatments and a cure! We are together in this fight, whatever it takes! Join us!

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The registry coordinator is available to respond to any questions you may have. Please don't hesitate to reach out by email at registrycoordinator@pscpartners.org.