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

Author:

Mazzotti Diego R12ORCID,Haendel Melissa A3,McMurry Julie A3,Smith Connor J4,Buysse Daniel J5ORCID,Roenneberg Till6,Penzel Thomas7ORCID,Purcell Shaun8,Redline Susan9,Zhang Ying9,Merikangas Kathleen R10,Menetski Joseph P11,Mullington Janet12ORCID,Boudreau Eilis4

Affiliation:

1. Division of Medical Informatics, Department of Internal Medicine, University of Kansas Medical Center , Kansas City, KS , USA

2. Division of Pulmonary Critical Care and Sleep Medicine, Department of Internal Medicine, University of Kansas Medical Center , Kansas City, KS , USA

3. Center for Health AI, University of Colorado Anschutz Medical Campus , Aurora, CO , USA

4. Department of Medical Informatics and Clinical Epidemiology, Oregon Health & Science University , Portland, OR , USA

5. Department of Psychiatry, University of Pittsburgh , Pittsburgh, PA, USA

6. Institute and Polyclinic for Occupational-, Social- and Environmental Medicine , LMU Munich , Germany

7. Interdisciplinary Center of Sleep Medicine, Charité University Hospital , Berlin , Germany

8. Department of Psychiatry, Brigham and Women’s Hospital, Harvard Medical School , Boston, MA , USA

9. Department of Medicine, Brigham and Women’s Hospital, Harvard Medical School , Boston, MA , USA

10. Genetic Epidemiology Research Branch, Intramural Research Program, National Institute of Mental Health , Bethesda, MD , USA

11. Foundation for the National Institutes of Health , Bethesda, MD , USA

12. Department of Neurology, Beth Israel Deaconess Medical Center, Harvard Medical School , Boston, MA , USA

Abstract

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.

Funder

American Heart Association

National Institutes of Health

Publisher

Oxford University Press (OUP)

Subject

Physiology (medical),Neurology (clinical)

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