Cure Mito Foundation and Hope for PDCD foundation, both patient-led foundations focused on advancing research and supporting families affected by Leigh syndrome and Pyruvate Dehydrogenase Complex Deficiency (PDCD), respectively, are excited to announce a launch of a PDCD patient registry.
Mar 18 2024Cure Mito Foundation Cure Mito Foundation and Hope for PDCD Foundation, both patient-led foundations focused on advancing research and supporting families affected by Leigh syndrome and Pyruvate Dehydrogenase Complex Deficiency , respectively, are excited to announce a launch of a PDCD patient registry.
Both registries will be hosted on the Sanford CoRDS registry platform. Sanford CoRDS is the largest, free international rare disease registry. It works to connect participants, advocacy groups and researchers in the field. Frances Muenzer Pimentel, founder of the Hope for PDCD foundation and mom to Violet, who has PDCD, said: "Hope for PDCD is thrilled to launch the first ever international and patient initiated registry for PDCD on the CoRDS platform in conjunction with Cure Mito. Launching on CoRDS with Cure Mito allows the 25-35% of PDCD patients that also have a Leigh Syndrome diagnosis to complete both registries on one platform.
The unified registry platform will facilitate deeper insights into PDCD and Leigh Syndrome, potentially unveiling commonalities that could lead to more effective treatments. It also opens avenues for patients to participate in a broader range of studies and trials relevant to their conditions.
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