Data Portal Core

项目总结 考虑到心力衰竭伴射血分数保留(HFpEF)综合征的复杂性，有一个主要的 未满足的需求是创建可集成各种不同数据源的全面资源，以 更大的科学界的消费。相对“孤立”的科学调查方法 到目前为止，HFpEF尚未导致治疗进展；因此，我们必须转向新的方法，包括 与世界各地的研究人员更广泛地共享未确认身份的数据，以便进行更多的新调查 使用这些数据。由于这些原因，HFpEF的临床研究将取得重大进展。 利用NHLBI BioData Catalyst资源的高效心脏共享数据门户；聚合、 组织和管理HeartShare数据；并快速将未识别的数据提供给合格的人员进行分析 世界各地的调查人员。NHLBI BioData Catalyst资源非常适合 HeartShare计划，因为它促进了可查找性、可访问性、互操作性和可重用性(公平)， 数据民主化、强大的搜索/分析工具、基于云计算以及与Trans- 精准医学组学(TOPMed)计划。它还将支持NHLBI的战略愿景目标 利用数据科学领域新出现的机会，以开辟HFpEF调查的新领域。我们 提出以下具体目标以实现HeartShare数据门户核心的目标：(1)创建 全面的基于Web的HeartShare数据门户，使用NHLBI BioData的现有基础设施 Catalyst，可供研究社区访问，提供数据存储/访问和分析工具，以及 支持在线表型/组学可视化。(2)跨不同数据集的生态系统集成数据 和适用于HeartShare的数据资源，包括队列数据、临床试验数据、多组学数据、EHR 数据(包括通过快速医疗保健互操作性资源(FHIR)标准与Center for Medicare和Medicaid服务和私营保险公司数据)、研究测试、生物标记物和在线存储库 对未识别的图像(例如，超声心动图、核磁共振扫描、心电描记)进行分析。(三)打造全面发展的 使用Eureka平台的患者参与资源(基于网络和移动平台)，以实现(1) 远程同意和填写表格，(2)参与者的交流门户(能够 患者查看他们自己的个人数据和测试结果，并汇总心跳共享汇总数据)；以及数据 收集家用设备、传感器和移动健康应用程序。

PROJECT SUMMARY Given the complexity of the heart failure with preserved ejection fraction (HFpEF) syndrome, there is a major unmet need to create a comprehensive, resource that can integrate a wide variety of disparate data sources for consumption by the greater scientific community. A relatively “siloed” approach to scientific investigation in HFpEF has not resulted in therapeutic advances thus far; therefore, we must pivot to new approaches, including wider sharing of de-identified data to researchers worldwide to allow for a greater number of novel investigations using the data. For these reasons, a major advance in the clinical investigation of HFpEF will be the development of an effective HeartShare Data Portal that capitalizes on the NHLBI BioData Catalyst resource; aggregates, organizes and curates HeartShare data; and rapidly makes de-identified data available for analysis by qualified investigators around the world. The NHLBI BioData Catalyst resource is ideally suited for the tasks of the HeartShare program because it promotes findability, accessibility, interoperability, and reusability (FAIR-ness), data democratization, robust search/analysis tools, cloud-based computing, and integration with the Trans- Omics for Precision Medicine (TOPMed) program. It will also support NHLBI’s Strategic Vision objective of leveraging emerging opportunities in data science in order to open new frontiers in HFpEF investigation. We propose the following specific aims to accomplish the goals of the HeartShare Data Portal core: (1) To create a comprehensive web-based HeartShare data portal that uses the existing infrastructure of the NHLBI BioData Catalyst and is accessible to the research community, provides data storage/access and analytic tools, and supports online phenotype/omics visualization. (2) To integrate data across an ecosystem of diverse datasets and data resources applicable to HeartShare, including cohort data, clinical trial data, multi-omics data, EHR data (including integration via the Fast Healthcare Interoperability Resources (FHIR) standard with Center for Medicare and Medicaid Services and private insurer data), research testing, biomarkers, and an online repository of de-identified images (e.g., echocardiograms, MRI scans, ECG tracings). (3) To create a comprehensive patient engagement resource (web- and mobile-based platforms) using the Eureka platform to allow for (1) remote consenting and completion of forms, (2) a communication portal for participants (with the ability for patients to view their own individual data and test results, and aggregate HeartShare summary data); and data collection for home devices, sensors, and mobile health applications.