About the Registry
The Registry's mission 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.
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History: The Registry was created with the guidance of the NIH Office of Rare Disease Research (ORDR). In 2012, PSC Partners was one of the rare disease organizations selected by the ORDR to participate in their Global Rare Disease (Patient) Registry and Data Repository pilot program. This registry is the exclusive property of PSC Partners.
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The PSC Partners Patient Registry Committee: The PSC Partners Patient Registry Committee ensures the efficient and responsible governance of the Registry.
PSC Partners Seeking a Cure: PSC Partners Seeking a Cure is a US-based 501(c)3 nonprofit foundation created in 2005. The mission of PSC Partners is to provide education and support to PSC patients, families, and caregivers, and to raise funds to research causes, treatments, and potential cures for primary sclerosing cholangitis. The PSC Partners Patient Registry welcomes worldwide registry participants.
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Please visit the PSC Partners website at www.pscpartners.org for more information about the organization, including research grants, patient conferences, and the PSC Partners online resources (education, newsletters, social media locations).