RARE Daily

Sanford Health’s CoRDS Partners with C-Path’s RDCA-DAP and Cure Mito Foundation to Aggregate Rare Disease Data in Platform

July 14, 2023

Rare Daily Staff

The Critical Path Institute said Coordination of Rare Diseases based at Sanford Research (CoRDS), in partnership with Cure MITO, will contribute its mitochondrial disorders data from its international patient registry to the C-Path-managed Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP).

RDCA-DAP provides a centralized and standardized infrastructure to support and accelerate rare disease characterization targeted to accelerate clinical drug development. It also advances best practices to support the conduct of natural history studies, with attention to data quality standards, in order to be most useful to clinical trial design and regulatory review. It includes an integrated database and analytics hub that allows for the aggregation of rare disease data from various sources and enables efficient interrogation of that data.

“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,” said Alexandre Bétourné, executive director of RDCA-DAP.

Since its inception, CoRDS has dedicated itself to coordinating the advancement of research into more than 10,000 rare diseases, working with patient advocacy groups, individuals, and researchers. The registry captures health information from diagnosed and undiagnosed patients, unaffected carriers, and at-risk patients. This valuable database connects researchers and patients and alerts participants of emerging clinical trials.

“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 and patient registry director of 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.”

Photo: Sophia Zilber, board member and patient registry director of Cure MITO.


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