Published March 30, 2023 | Version 3

Platforms & registries for sharing participant-level COVID-19 data

  • 1. Universitätsklinikum Heidelberg, TDR, the Special Programme for Research and Training in Tropical Diseases
  • 2. Georg-August-Universität Göttingen
  • 3. Universitätsklinikum Heidelberg

Description

This dataset presents an overview of platforms and registries that store, harmonize, and, in some cases, share COVID-19-related participant-level data, including clinical-epidemiological, human and pathogen OMICs, and high dimensional imaging data. The dataset provides an in-depth review of adherence to the FAIR principles, governance, benefit sharing and other ethical concerns related to resources that share harmonized, participant-level data for the research response to COVID-19. 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.

Notes

Funding for the development of the COVID-19 platform and registry dataset was provided to Lauren Maxwell by TDR, the Special Programme for Research and Training in Tropical Diseases [P20-00007]

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