We are thrilled to share that Leigh syndrome patient registry data that we have collected is now being integrated into Critical Path Institute (C-Path)‘s RDCA-DAP platform.
RDCA-DAP provides a centralized and standardized infrastructure to support and accelerate rare disease characterization targeted to accelerate clinical drug development.
“We are excited to collaborate with Sanford Research, integrating the invaluable patient data they collected to help drive research for rare mitochondrial disorders including Leigh syndrome,” said Alexandre Bétourné, PhD, PharmD, PMP, Executive Director, RDCA-DAP. “This partnership demonstrates our shared commitment towards eliminating information silos in the field of rare mitochondrial disorders and an important milestone achieved through our collaboration with the Cure Mito Foundation.
“Data sharing is critical for being able to help patients with the urgency they deserve. When we launched the Leigh syndrome patient registry, our vision was not only to offer hope for the future but to provide value to our community all along,” said Sophia Zilber, Board Member, Patient Registry Director, Cure MITO. “Indeed, in less than two years, the data we have collected has been presented at conferences around the world, shared with researchers and industry partners, and utilized to contact potential study participants numerous times. We are thrilled to expand this progress by contributing our data to RDCA-DAP and are so grateful to both CoRDS and C-Path for their support and partnership.”
Learn more in the press release: https://c-path.org/sanford-health-rare-disease-data-registry-partners-with-c-paths-rdca-dap-cure-mito-foundation-to-aggregate-rare-disease-data-in-platform/
