Craig Martin, CEO of Global Genes, discusses the organization’s recent partnership with Rare-X, a technology non-profit that securely gathers, structures, and shares patient-owned data.
As Mr. Martin explains, Rare-X is an organization that gathers rare disease patient data in order to accelerate diagnosis, treatments, and cures for rare disease. By combining forces with Global Genes, RARE-X will provide expertise, content, tools, technologies, and support services to enable patient communities to safely collect and share their data with researchers worldwide.
As part of the collaboration, RARE-X will build data-collection portals for interested patient communities, and work in partnership with Global Genes to educate, train, and provide ongoing support to ensure patient communities get the most out of their data collection efforts. The Global Genes/RARE-X partnership will also provide undiagnosed and “N-of-1” patients with a dedicated entry point and tool for data collection. RARE Foundation Alliance member organizations can begin signing up for RARE-X in the first quarter of 2022. Access to the RARE-X Data Collection Platform will be free to participating patients and patient organizations.
In a recent press release, Mr. Martin commented on the importance of patient data in rare diseases. He stated, “Patient data is perhaps the most valuable asset rare disease communities can leverage to generate research interest and spur drug development in their condition area. Working with RARE-X, we’ll make it possible for rare disease communities to collect, utilize, and share their data to generate progress toward treatments.”
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