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2017 Registry Information Informs PSC & PBC "Call to Action" Education Campaign

PSC Partners Seeking a Cure Surpasses 1,000 Patients in International Registry and Discovers Unexpected Misdiagnoses and PSC Partners Seeking a Cure and PSC Support Announce a Call to Action for Medical Stakeholders to Better Understand and Diagnose Rare Liver Diseases

An unexpected result of enrolling more than 1,000 patients in the registry is that some of those 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 troubling, given that effective treatment exists for PBC and patients who thought they had PSC may have been missing out on treatment that would slow the progression of PBC.

PSC Partners Seeking a Cure and PSC Support, a nonprofit PSC patient organization based in the UK, have been working on an educational campaign to promote a better understanding and more accurate diagnosis of these two rare liver diseases. Given the similarity of their names, PSC and PBC have been confused in medical publications, among regulatory bodies, and in medical practice -- as well as in individual patient diagnoses, as seen in the PSC patient registry.

With the recent renaming of another liver disease, primary biliary cholangitis (PBC), formerly called primary biliary cirrhosis, an opportunity has arisen to alert clinicians of the potential for confusion and stress the importance of correctly identifying these two distinctly different bile duct diseases, PBC and PSC. Patients with PSC also have a devastating and distinctly increased risk of colon and bile duct cancers, while patients with PBC fortunately do not have increased risk for either of these cancers. Consequently, patients with PSC need special cancer surveillance, as well as advice on how to live with cancer risk in a way that is supportive and not life-limiting.

Excerpts above are from press releases by PSC Partners Seeking a Cure. See full text of related press releases: 2017-04 Press Release and 2016-11 Press Release.

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