RARE Daily

C-Path and Ultragenyx Enter Data Sharing Agreement

December 1, 2022

Critical Path Institute and Ultragenyx Pharmaceutical said that they have entered into a data sharing agreement to incorporate rare disease patient data into C-Path’s Rare Disease Cures Accelerator-Data and Analytics Platform.

Photo: RDCA-DAP Scientific Director Alexandre Betourne

C-Path’s Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) provides a centralized and standardized infrastructure to support and accelerate rare disease characterization targeted for clinical development. Additionally, the platform advances best practices to support the conduct of natural history studies, with attention to established data quality standards, in order to be most useful to clinical trial design and regulatory review.

It includes a robust, integrated database and analytics hub that allows for the aggregation of rare disease data from various sources and the efficient and effective interrogation of that data.

Ultragenyx will contribute GNE myopathy data from its completed disease monitoring program.

“We applaud Ultragenyx for sharing this data,” said RDCA-DAP Scientific Director Alexandre Betourne.  “This is RDCA-DAP’s second dataset for this disease, which will increase potential discoveries for GNE myopathy and will open opportunities in related disorders.”

C-Path said it continues to enrich its database including muscular and neuromuscular disorders with more than 66 datasets spanning 25 different diseases to date.

Author: Rare Daily Staff

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