A review of platforms and registries for harmonizing, storing, and sharing participant-level COVID-19 clinical-epidemiological, OMICs, and imaging data

This webpage presents an overview of platforms and registries for sharing COVID-19-related participant-level data, including adherence to the FAIR principles, governance, benefit sharing and other ethical concerns. Systematic searches were conducted between April 2020 and June 2021 to identify relevant platforms and registries. We applied natural language processing to the CORD-19 dataset in March of 2021 and consulted with COVID-19 focused researchers in Asia, Africa, and Latin America to identify non-English language COVID-19-related data sharing resources.

A full description of the development of the overview of COVID-19-related platforms and registries for harmonizing, storing, and sharing participant-level data is available here (can insert link to preprint). The webpage was last updated in July, 2021.

Webinar: In July 2021, The Global Health Network, with TDR and the COVID-19 Clinical Research Coalition, hosted a webinar to present this database and review the interoperability of data sharing efforts and how these initiatives map to best practice for ethical, equitable, and effective data sharing and application of the FAIR Principles for managing data resources. You can now watch the recording of this webinar or read the extended report, with summaries of the speakers' talks and Q&A session.

Registries for COVID-19-related participant-level data that are within the scope of FAIRsharing.org can also be accessed here.

Please complete this brief REDCap survey to have your platform or registry added to the spreadsheet. Send any comments or questions to maxwelll@who.int.

The use of this app and data within it is subject to a CDLA Permissive 1.0 license which allows for any modifications or use cases, but requires users to cite the data generators for their original work.