Living With PSC Episode 22: The Importance of the PSC Partners Registry, A Discussion with Registry Director Rachel Gomel
Update: 2021-03-16
Description
PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!
In episode 22, Host Niall McKay talks with PSC Partners Patient Registry Director Rachel Gomel about the value of the PSC Patient Registry and the importance of this database in the search for treatments and a cure for PSC.
"The collected information helps in our understanding of where our rare patients are located. The registry also shows us who could be a match for a specific clinical trial, and how aggregated data collected on patients can show disease trends and unmet needs," says Gomel. "The privacy of the patients is of utmost importance to PSC Partners," she adds.
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