The Chan Zuckerberg Initiative (CZI) is seeking responses to a new Request for Information (RFI): Patient Registry Data Interoperability as part of their Rare As One Project. Submissions are due by November 30, 2021 at 5 p.m. Pacific Time.
Rare disease patients often find their health data scattered across clinics, hospitals, and research institutions—where a single data source alone cannot generate sufficient knowledge to accelerate discovery. CZI goal for this RFI is to map data interoperability challenges and support ideas that make it easier for patient communities to share data with researchers, and for researchers to fully leverage patient voices in research.
They’re reaching out in the hope you will contribute your ideas, and share this opportunity with members of your network. Welcoming patients, patient groups, researchers, clinicians, health technology developers, and a diverse range of experts across the broader health data ecosystem to share knowledge and submit information that can help address similar challenges from different perspectives.
If you have any questions about this RFI, please email firstname.lastname@example.org with the subject heading “RAO RFI.”