PATIENTS' DATA POWERING PROGRESS

RARE-X and the Broad Institute of MIT and Harvard Partner to Advance Efforts in Patient-Powered Data Collection and Sharing

Both organizations have aligned around mission and purpose to deliver transformative technology improving human health globally by delivering value for patients and supporting future rare disease research.

Aliso Viejo, CA — May 11, 2021 —RARE-X has announced a collaboration with the Broad Institute of MIT and Harvard, leveraging innovative technology to support new data-collection approaches, data governance, and data sharing. Through their partnership, these non-profit organizations will expand the usability, visibility, and global reach of data to accelerate research for 9,500 rare diseases.

“Partnering with the Broad Institute is especially valuable to the rare disease community; benefits include leveraging best-in-class technology, aligning on patient-ownership of data, and linking to the deep collaborations the Broad Institute has with biopharma and research. What RARE-X brings to this partnership is depth in understanding of rare disease patients and many of the nuances associated with rare disease research,” said Nicole Boice, founder and CEO of RARE-X.

The Broad Institute has a successful track record of partnering with non-profit patient advocacy organizations to support patient-partnered research in Genomics, Population Health, and Cancer, through both research and open-source technology development initiatives. Since 2015, the Broad has been operating a secure cloud-native technology platform that supports projects such as Count Me In, an organization that partners with patients to accelerate cancer research. This collaboration will extend the capabilities of this platform to bring its benefits to bear on rare diseases, which affect over 400 million patients worldwide. The platform will support quality patient-owned data, appropriately governed and consented for sharing and will provide opportunities for cross-disease research and basket trials. This platform ultimately creates efficiencies and eases the burden on patients while helping enable an ecosystem of discovery that will transform rare disease research

“This is a unique opportunity to level the playing field for patients and researchers to participate in and drive future treatments and cures. All patients and rare disease communities should be counted and can bring forward research-quality data easily and efficiently. And all researchers, regardless of access to infrastructure and funding, should have the ability to test hypotheses and participate in driving new knowledge and ideas to support often overlooked rare diseases,” said Boice.

RARE-X and the Broad Institute are already working to bring together patient data from diverse sources in service of advancing rare disease research.

“It’s an honor to partner with RARE-X on this important effort,” said Anthony Philippakis, chief data officer for the Broad Institute of Harvard and MIT. “By bringing Broad’s expertise in data generation and data analysis together with RARE-X’s capabilities in patient engagement and patient advocacy, we can work together to accelerate progress in science and medicine.”

About RARE-X

RARE-X is a 501(c)(3) patient advocacy organization focused on supporting the acceleration and development of life-altering treatments and future cures for patients impacted by a rare disease.  Enabled by best-in-class technology, patients, researchers, and other technology vendors, RARE-X will gather structured, fit-for-purpose data to share broadly, benefitting from 21st-century governance, consent, and federated data sharing technology.  RARE-X is building the largest collaborative patient-driven, open-data access project for rare diseases globally. For more information, visit www.rare-x.org.

About the Broad Institute of MIT and Harvard

The Broad Institute of MIT and Harvard was founded in 2003 to empower this generation of creative scientists to transform medicine with new genome-based knowledge. The Broad Institute seeks to describe the molecular components of life and their connections; discover the molecular basis of major human diseases; develop effective new approaches to diagnostics and therapeutics; and disseminate discoveries, tools, methods and data openly to the entire scientific community. Founded by MIT, Harvard and its affiliated hospitals, and the visionary Los Angeles philanthropists Eli and Edythe L. Broad, the Broad Institute includes faculty, professional staff and students from throughout the MIT and Harvard biomedical research communities and beyond, with collaborations spanning over a hundred private and public institutions in more than 40 countries worldwide. For further information about the Broad Institute, go to www.broadinstitute.org.

 

 

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