Since 1994, NIH has supported the standardized collection of polysomnography (PSG) studies as part of landmark multi-center studies which have used well-defined methods for data collection and quality assurance. Across studies, information on disease risk factors and outcomes, cardiovascular and neurocognitive function, and biochemical marker data, are available for children and adults representing diverse backgrounds. These data could serve as an invaluable national resource, providing opportunities to engage the scientific community, including trainees, in efforts to discover predictive bio-physiological signals for disease incidence and progression and to address critical questions regarding disease susceptibility and subgroup differences not possible using data from single cohorts. Improved access to those data would add value to already funded projects, ensuring maximal and enduring impact. Optimal use of such data requires the systematic organization and structuring of these data and access to procedures and computational tools for easy but secure access and curation of well-defined data subsets. The NHLBI National Sleep Research Resource (NSRR) aims to meet these compelling needs, thus leveraging the NIH's investments in the collection of sleep data in well characterized cohort studies and clinical trial to create a unique national resource of reliably-scored, well-annotated research PSGs from many major NHLBI cohorts or clinical trials (~ 50,000 sleep studies). The NSRR also will include: a) an electronic database of polysomnography data (raw signals, scored annotations, and summary sleep metrics); b) quantitative metrics of heart rate and EEG signals; b) linked data on clinical, physiological and biochemical parameters; c) a tool set to allow the user to search and access de-identified research data using a secure, cloud platform; d) an open-source suite of tools for offline analyses for signal processing, file structure editing, data harmonization and statistic generation; and e) user support for resource usage. NSRR will be a scalable and expandable resource constructed by capitalizing on major advances in informatics, developed with leading-edge agile software engineering methodology, user-centered interface design and an ontology-driven architecture.
The creation of a central library of well-defined sleep studies linked to clinical and physiological data will transform data sharing approaches across the scientific community, enhancing the ability of researchers to address critical questions regarding the role of sleep disorders in the etiology of chronic health conditions, such as cardiovascular disease and identify subgroups of the population at greatest risk for sleep disorders and their related co-morbidities.
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