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. 2023 Oct;5(10):e712-e736.
doi: 10.1016/S2589-7500(23)00129-2.

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

Lauren Maxwell  1 , Priya Shreedhar  2 , Delphine Dauga  3 , Peter McQuilton  4 , Robert F Terry  5 , Alisa Denisiuk  6 , Fruzsina Molnar-Gabor  7 , Abha Saxena  8 , Susanna-Assunta Sansone  4
Affiliations

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

Lauren Maxwell et al. Lancet Digit Health. 2023 Oct.

Abstract

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-specific and discipline-specific resources for collecting, curating, and disseminating participant-level data. We conducted a scoping review and cross-sectional survey to identify and describe COVID-19-related platforms and registries that harmonise and share participant-level clinical, omics (eg, genomic and metabolomic data), imaging data, and metadata. We assess how these initiatives map to the best practices for the ethical and equitable management of data and the findable, accessible, interoperable, and reusable (FAIR) principles for data resources. We review gaps and redundancies in COVID-19 data-sharing efforts and provide recommendations to build on existing synergies that align with frameworks for effective and equitable data reuse. We identified 44 COVID-19-related registries and 20 platforms from the scoping review. Data-sharing resources were concentrated in high-income countries and siloed by comorbidity, body system, and data type. Resources for harmonising and sharing clinical data were less likely to implement FAIR principles than those sharing omics or imaging data. Our findings are that more data sharing does not equate to better data sharing, and the semantic and technical interoperability of platforms and registries harmonising and sharing COVID-19-related participant-level data needs to improve to facilitate the global collaboration required to address the COVID-19 crisis.

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Conflict of interest statement

Declaration of interests LM received grants from Tropical Disease Research via WHO (P20-00007), the ReCoDID project (which is funded by the EU Horizon 2020 Research and Innovation Programme; 825746), and the Canadian Institutes of Health Research Institute of Genetics (01886-000). S-AS received a grant from FAIRsharing, which is funded by the Wellcome Trust (212930/Z/18/Z). The funder had no role in study design, data collection, data analysis, data interpretation, writing of the manuscript, or the decision to publish. All other authors declare no competing interests.

Figures

Figure
Figure
Qualitative evaluation of FAIRness (A) Disease-specific platform and registry correspondence with the FAIR criteria for data resources. (B) Participant-level data types hosted by platforms and registries, and correspondence with the FAIR criteria for data resources.
See this image and copyright information in PMC

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