The Data and Research Center: Creating a Secure, Scalable, and Sustainable Ecosystem for Biomedical Research.

Annual review of biomedical data science
Authors
Keywords
Abstract

The Research Program's Data and Research Center (DRC) was established to help acquire, curate, and provide access to one of the world's largest and most diverse datasets for precision medicine research. Already, over 500,000 participants are enrolled in , 80% of whom are underrepresented in biomedical research, and data are being analyzed by a community of over 2,300 researchers. The DRC created this thriving data ecosystem by collaborating with engaged participants, innovative program partners, and empowered researchers. In this review, we first describe how the DRC is organized to meet the needs of this broad group of stakeholders. We then outline guiding principles, common challenges, and innovative approaches used to build the data ecosystem. Finally, we share lessons learned to help others navigate important decisions and trade-offs in building a modern biomedical data platform.

Year of Publication
2023
Journal
Annual review of biomedical data science
Volume
6
Pages
443-464
Date Published
08/2023
ISSN
2574-3414
DOI
10.1146/annurev-biodatasci-122120-104825
PubMed ID
37561600
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