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Term Definition

Within the context of this registry, by participant we mean the patient, and by registrar, we mean the person recording the answers.


Registry platform selected by the National Institutes of Health's (NIH) Office of Rare Diseases Research (ORDR) for patient registries in their pilot program; PSC Partners patient registry uses PatientCrossroads as its registry platform

Percutaneous transhepatic cholangiogram (PTC)

X-ray of the bile ducts inside and outside the liver; taken after contrast (dye) is injected directly into the bile ducts