Sleep and circadian informatics data harmonization: a workshop report from the Sleep Research Society and Sleep Research Network

Diego R Mazzotti, Melissa A Haendel, Julie A McMurry, Connor J Smith, Daniel J Buysse, Till Roenneberg, Thomas Penzel, Shaun Purcell, Susan Redline, Ying Zhang, Kathleen R Merikangas, Joseph P Menetski, Janet Mullington, Eilis Boudreau, Diego R Mazzotti, Melissa A Haendel, Julie A McMurry, Connor J Smith, Daniel J Buysse, Till Roenneberg, Thomas Penzel, Shaun Purcell, Susan Redline, Ying Zhang, Kathleen R Merikangas, Joseph P Menetski, Janet Mullington, Eilis Boudreau

Abstract

The increasing availability and complexity of sleep and circadian data are equally exciting and challenging. The field is in constant technological development, generating better high-resolution physiological and molecular data than ever before. Yet, the promise of large-scale studies leveraging millions of patients is limited by suboptimal approaches for data sharing and interoperability. As a result, integration of valuable clinical and basic resources is problematic, preventing knowledge discovery and rapid translation of findings into clinical care. To understand the current data landscape in the sleep and circadian domains, the Sleep Research Society (SRS) and the Sleep Research Network (now a task force of the SRS) organized a workshop on informatics and data harmonization, presented at the World Sleep Congress 2019, in Vancouver, Canada. Experts in translational informatics gathered with sleep research experts to discuss opportunities and challenges in defining strategies for data harmonization. The goal of this workshop was to fuel discussion and foster innovative approaches for data integration and development of informatics infrastructure supporting multi-site collaboration. Key recommendations included collecting and storing findable, accessible, interoperable, and reusable data; identifying existing international cohorts and resources supporting research in sleep and circadian biology; and defining the most relevant sleep data elements and associated metadata that could be supported by early integration initiatives. This report introduces foundational concepts with the goal of facilitating engagement between the sleep/circadian and informatics communities and is a call to action for the implementation and adoption of data harmonization strategies in this domain.

Keywords: circadian rhythm; harmonization; informatics; ontology; sleep.

© The Author(s) 2022. Published by Oxford University Press on behalf of Sleep Research Society. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Figures

Figure 1.
Figure 1.
The sleep-circadian data ecosystem. Physician scientists, researchers, and health informaticists must join their knowledge skills to achieve our goals of facilitating harmonization and adoption of standardized practices for improvement of large-scale clinical research in sleep medicine and circadian biology. This is represented by the need to understand the current status of the field (landscape analysis) and develop tools, standards and terminologies to address key questions in the field by leveraging specific use cases. Finally, the sleep research community requires additional training on the importance of clinical research informatics methods, with the ultimate goal of adopting them to support large-scale clinical research.

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