News from NORD

PSC Partners Seeking a Cure Surpasses 1,000 Patients in International Registry … and Makes an Unexpected Finding Regarding Misdiagnosis


PSC Partners Seeking a Cure, a nonprofit organization providing education, support, and research on behalf of those affected by primary sclerosing cholangitis (PSC), has recruited more than 1,000 patients for the international patient registry for those with this rare condition. The registry is designed to be a resource for researchers who are working to develop much-needed therapies for PSC since the disease currently has no effective treatment.

An unexpected result of the registry enrollment process is that some patients who tried to enroll learned, after answering a series of questions about their diagnosis and symptoms, that they do not actually have PSC. Instead, they have primary biliary cholangitis (PBC), a distinctly different disease that also affects the bile ducts.

This misdiagnosis is significant because effective treatment exists for PBC and patients who had been misdiagnosed with PSC may have been missing out on treatment that would slow the progression of their disease.

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