National Sleep Research Resource (NSRR)

描述(由申请人提供)：自1994年以来，美国国立卫生研究院一直支持多导睡眠监测(PSG)研究的标准化收集，作为具有里程碑意义的多中心研究的一部分，这些研究使用明确定义的方法进行数据收集和质量保证。在所有研究中，代表不同背景的儿童和成年人都可以获得关于疾病风险因素和结果、心血管和神经认知功能以及生化标志物数据的信息。这些数据可以作为宝贵的国家资源，提供机会让科学界，包括受训人员，努力发现疾病发病率和进展的预测生物生理信号，并解决有关疾病易感性和亚组差异的关键问题，这些问题是不可能使用来自单一队列的数据的。改善对这些数据的获取将增加已经获得资助的项目的价值，确保产生最大和持久的影响。要最有效地利用这些数据，就需要系统地组织和组织这些数据，并使用程序和计算工具，以方便而安全地获取和管理明确定义的数据子集。NHLBI国家睡眠研究资源(NSRR)旨在满足这些迫切的需求，从而利用NIH在收集具有良好特征的队列研究和临床试验中的睡眠数据方面的投资，创建一个独特的全国性资源，其中包括来自许多主要NHLBI队列或临床试验(约50,000项睡眠研究)的可靠评分、注释良好的研究PSG。NSRR还将包括：a)多导睡眠图数据(原始信号、评分注释和汇总睡眠指标)的电子数据库；b)心率和脑电信号的定量指标；b)临床、生理和生化参数的关联数据；c)允许用户使用安全的云平台搜索和访问未识别的研究数据的工具集；d)用于信号处理、文件结构编辑、数据协调和统计生成的离线分析工具的开源套件；以及e)用户对资源使用的支持。NSRR将是一个可伸缩和可扩展的资源，它利用信息学的重大进步，采用前沿的敏捷软件工程方法、以用户为中心的界面设计和本体驱动的架构开发。 相关性：建立一个与临床和生理数据相关联的明确定义的睡眠研究的中央图书馆将改变科学界的数据共享方法，提高研究人员解决有关睡眠障碍在慢性健康状况(如心血管疾病)病因学中的作用的关键问题的能力，并确定睡眠障碍风险最大的人群及其相关共病亚群。

DESCRIPTION (provided by applicant): 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. RELEVANCE: 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.