A new white paper and podcast present RARE-X’s novel way of developing Consent and Data-Sharing Agreements.
Aliso Viejo, CA —November 4, 2021 — RARE-X, a nonprofit organization dedicated to enabling patient communities to easily collect, manage, and share their health data through best-in-class technology, has published a new white paper titled A Patient-Centric Approach to Consent. The white paper explores RARE-X’s method of developing flexible and easy-to-understand Consent and Data-Sharing Agreements. Its novel approach is another way RARE-X lowers the barriers to participation for rare disease patients while protecting their privacy and allowing them to retain ownership of their own data.
The white paper shows how the RARE-X consent and governance processes capitalize on advances in information technology, allowing for flexibility. Most importantly, it recognizes patients as owners of their data and gives them, rather than a researcher, patient organization, or corporation, the power to determine who has access to their data. The paper draws from the insights of Vanessa Vogel Farley, research & data governance lead for RARE-X, and data governance expert, Joy Pritts, Esq.
An accompanying RARE-Xtra podcast features Deven McGraw, chief regulatory officer for Ciitizen, and Vanessa Vogel Farley, who describe the consent process, why it was necessary to reinvent it, and what a patient-centric consent process looks like. Daniel Levine hosts the RARE-Xtra podcast.
RARE-X is a 501(c)(3) rare disease technology nonprofit 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.
Tom Hume, Marketing Communications – RARE-X