The Chan Zuckerberg Initiative (CZI) has launched a Request for Information (RFI): Patient Registry Data Interoperability as part of the Rare As One project, aimed at mapping data interoperability challenges and support ideas that will make it easier for patient communities to share data with researchers, and for researchers to fully leverage patient voices in research.
The RFI has been built after extensive consultation with patient groups, clinicians, researchers, and biotech industry actors. To streamline the submission process and encourage broad participation, CZI has provided six RFI questions—only one response is required for submission, but submitters may choose to respond to any number of the six questions.
Responses are encouraged from patient communities, researchers, clinicians, health technology developers, and a diverse range of experts to share knowledge and submit information that can help address similar challenges from different perspectives.
Submissions are due by November 30th.
Learnings from the RFI are intended to be shared with the community and stakeholders.
For more information and to complete the RFI: https://chanzuckerberg.com/rfa/rare-as-one-request-for-information-patient-registry-data-interoperability-2/