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Preprint Open Access

FAIR, ethical, and coordinated data sharing for COVID-19 response: a review of COVID-19 data sharing platforms and registries

Lauren Maxwell; Priya Shreedhar; Delphine Dauga; Peter McQuilton; Robert F Terry; Alisa Denisiuk; Fruzsina Molnar-Gabor; Abha Saxena; Susanna-Assunta Sansone

Data sharing is central to the rapid translation of research into advances in clinical medicine and public health practice. In the context of COVID-19, there has been a rush to share data, marked by an explosion of population- and discipline-specific resources for collecting, curating, and disseminating participant-level data. We present a comprehensive overview of COVID-19-related platforms and registries that harmonize and share participant-level clinical, OMICs, and imaging data and metadata, and describe how these initiatives map to best practice for ethical, equitable, and FAIR management of data resources. Data sharing resources were concentrated in high income countries and siloed by comorbidity, body system, and data type. Resources for sharing clinical data were less FAIR than those for sharing OMICs or imaging data. We review gaps and redundancies in COVID-19 data sharing efforts and outline recommendations to build on existing synergies and align with frameworks for effective and equitable data reuse.

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