Submission 1

Submission 1

Objective: The gold standard method for diagnosing sleep disorders is polysomnography, which generates comprehensive data about biophysical changes occurring during sleep and quantifies physiological disturbances that enable characterization of the association between sleep disturbances with other public health related problems. We developed the National Sleep Research Resource (NSRR), a comprehensive system for sharing sleep data. The NSRR embodies elements of a “data commons” aimed at accelerating sleep research to address critical questions about the impact of sleep disorders on important health outcomes. 

Approach: The NSRR was designed and developed using a metadata-guided, agile development paradigm. The NSRR consists of three main components: (a) metadata-annotated datasets; (b) user interfaces to browse, search, query and download data; and (c) computational tools for off-line data analysis. The NSRR also embeds the process for managing data use agreement, evidence of Institutional Review Board review, and the corresponding access control in its web-portal. Linkages to additional national data resources are also facilitated in the backend. The NSRR develops and embraces metadata standards to maximize semantic, structural, and platform interoperability to ultimately enhance data reusability and scientific rigor.

Results: Data from 10 large, NIH-funded sleep cohort studies, including several from the Trans-Omics for Precision Medicine (TOPMed) cohort, have been integrated. The NSRR contains 26,808 subjects, 51,435 linked files of raw or processed signals, and 31,166 European Data Format (EDF) files for browsing, query, and downloading. Launched in April 2014, over 3,000 registered users have downloaded a total of over 90 terabytes of data. 
Results: Data from 10 large, NIH-funded sleep cohort studies, including several from the Trans-Omics for Precision Medicine (TOPMed) cohort, have been integrated. The NSRR contains 26,808 subjects, 51,435 linked files of raw or processed signals, and 31,166 European Data Format (EDF) files for browsing, query, and downloading. Launched in April 2014, over 3,000 registered users have downloaded a total of over 90 terabytes of data.