Rare Daily Staff

The nonprofit, federated, rare disease data collection platform RARE-X said it has entered into a collaboration with Critical Path Institute to improve ways researchers can access and analyze patient data.

C-Path, with its Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative, and RARE-X are developing an ecosystem in which rare disease data are collected, shared, and used to further research. The two said they share a similar vision to make individual-level data available and used as widely as possible by researchers and drug developers.

The RARE-X and C-Path collaboration will share learnings around standardization of data elements and data structures, consent language, and other elements promoting the inter-operability of data sharing.

“Working jointly with RARE-X, we can develop models and drug development tools informed by the data collected and consented for on the RARE-X platform,” said Jeff Barrett, C-Path senior vice president and RDCA-DAP Lead. “Such models would be developed with open data science principles in mind and the intention to facilitate the development of new treatments for rare disease patients. For example, an initial collaborative effort with RARE-X may include the co-development of a disease progression model for a specified disease area.”

RARE-X supports the collection of structured patient-owned data and has developed data governance and consents that support patients in sharing their de-identified data broadly and often. In addition to data collection, RARE-X is focused on connecting disparate data, while embarking on comprehensive federated data-sharing initiatives that support data sharing consortia to accelerate research and medicine development.

C-Path’s RDCA-DAP provides a centralized and standardized infrastructure to support and accelerate rare disease characterization targeted for clinical development. Additionally, the platform includes a framework that supports the rigorous 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.

“We look forward to bringing forward best practices on structure and standardization of rare disease data, governance, consent, and data tracking with C-Path to accelerate research,” said RARE-X CEO Charlene Son Rigby. “And by collaborating with C-Path, patients’ ability to share their data through the RARE-X platform, enabled with our unique consent and data-sharing agreements, will expand.”

Photo: Charlene Son Rigby, CEO of RARE-X

X