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RARE-X Explores Patient-Owned Data Gathering for Cell and Gene Therapy Developers

In Partnership with ARM Foundation for Cell and Gene Medicine, RARE-X Has Released a White Paper Highlighting New Solutions Using Non-Proprietary Patient-Owned Data Collection Platforms

Aliso Viejo, CA — March 30, 2021 — RARE-X, a collaborative platform for patient-controlled data collection and sharing, has published a new white paper exploring the primary issues and requirements for data gathering faced by cell and gene therapy developers. Enabling the Future of Cell and Gene Therapies through Non-Proprietary Patient-Owned Data Collection considers solutions and the role a standardized non-proprietary data collection platform, such as RARE-X, can play in addressing research challenges. RARE-X published the white paper in partnership with The ARM Foundation for Cell and Gene Medicine.

“A significant finding of the white paper is that patient organizations are best situated to gather the data needed by stakeholders and ensure that it is appropriately shared with others,” Morrie Ruffin, co-founder and board member, ARM Foundation for Cell and Gene Medicine.

The paper draws from the insights of top cell and gene therapy researchers and data scientists from biotech, government, and universities. An accompanying RARE-Xtra audio interview is also available, including discussions with a panel of researchers, biotech executives, and policy influencers.

Visit the RARE-X website to download a complimentary copy of Enabling the Future of Cell and Gene Therapies through Non-Proprietary Patient-Owned Data Collection or listen to the RARE-Xtra recorded panel at RARE-X.org.


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 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 ARM Foundation for Cell and Gene Medicine

The ARM Foundation for Cell and Gene Medicine serves as the education and information catalyst on issues fundamental to making gene and cell therapies, tissue-engineered products and other regenerative medicine treatments available to patients. It is an independent, 501(c)(3) non-profit organization established in 2018 by the Alliance for Regenerative Medicine (ARM), the preeminent international advocacy organization for regenerative medicine and advanced therapies.  For more information, please visit www.thearmfoundation.org.

 Media Contact:

Tom Hume, Marketing Communications – RARE-X




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