Independent non-profit organisation Critical Path Institute (C-Path) and advocacy organisation National Organisation for Rare Disorders (NORD) are set to formally launch development of a new rare disease data and analytics platform.
Funded by the Food and Drug Administration (FDA), the platform aims to speed-up the development of new therapies for rare diseases.
Go deeper with GlobalData
It will address knowledge gaps on the natural course of disease, the clinical evaluation of new treatments, and patients’ perspective on diseases and respective treatments.
Dunned rare disease cures accelerator-data and analytics platform (RDCA-DAP), the technology will provide a centralised and standardised infrastructure to advance rare disease characterisation.
The platform will include data from multiple sources such as clinical trials, observational studies, real-world data and patient registries, as well as those within NORD’s IAMRARE registry platform.
The analytics platform of RDCA-DAP will allow effective investigation of the integrated rare disease data to generate solutions to inform clinical trial design and regulatory review.
C-Path president and chief executive officer Joseph Scheeren said: “For people living with rare diseases, time is of the essence.
“By leveraging the rare disease community access and data of NORD and the data curation, aggregation, governance and advanced analytics expertise of C-Path, we are poised to make a significant impact on rare disease drug development by providing quality data that will inform clinical trial design and accelerate the development of therapies.”
According to NORD president and chief executive officer Peter Saltonstall, more than 25 million people in the US are affected by one or more of the over 7,000 rare diseases.
Saltonstall said: “FDA-approved treatments exist for only 10% of rare diseases; with this collaboration we can change that statistic for the better for our rare community.”
