To showcase the importance of data sharing in rare disease drug development and to highlight the first year milestones, the Critical Path Institute (C-Path) and the National Organization for Rare Disorders (NORD®) hosted the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) 2020 Virtual Workshop on Monday, October 19th. RDCA-DAP is a platform that serves as a centralized and standardized infrastructure to support data sharing and data analysis to aid in the understanding of rare diseases.
The virtual workshop, attended by patient groups, academia, industry and regulatory agencies informed the rare disease community on topics including pilot analyses and the development of tools facilitated by RDCA-DAP to advance characterization and accelerate drug development in rare diseases. Additional updates were provided on the platform’s data sharing infrastructure and recent enhancements, including the ability to search, sort and analyze data.
In year one, the RDCA-DAP team worked with the community to develop a data governance structure that answers the needs of both data contributors and data users, accessed initial datasets and built actionable prototypes to demonstrate the utility of the platform.
RDCA-DAP is positioned to generate solutions to drug development bottlenecks by maximizing the utility of patient-level data and making that data available to a larger community.
A full recording of the workshop can be accessed here.