Data Portal Core

项目摘要 考虑到射血分数保留性心力衰竭（HFpEF）综合征的复杂性， 未满足的需求，以创建一个全面的，资源，可以集成各种不同的数据源， 更大的科学界的消费。一种相对“孤立”的科学调查方法， 到目前为止，HFpEF还没有带来治疗进展;因此，我们必须转向新的方法，包括 向全世界的研究人员更广泛地分享去识别数据，以便进行更多的新研究 使用数据。由于这些原因，HFpEF临床研究的一个主要进展将是开发 一个有效的HeartShare数据门户，利用NHLBI生物数据催化剂资源;聚合， 组织和策划HeartShare数据;并迅速使去识别数据可供合格的分析人员使用 世界各地的调查员。NHLBI生物数据催化剂资源非常适合于 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（公平性）， 数据民主化，强大的搜索/分析工具，基于云的计算，以及与跨 Omics for Precision Medicine（TOPMed）它还将支持NHLBI的战略愿景目标， 利用数据科学的新兴机会，开辟HFpEF研究的新领域。我们 为实现HeartShare数据门户的核心目标，我提出了以下具体目标：（1）创建一个 基于网络的HeartShare综合数据门户，使用NHLBI BioData的现有基础设施 催化剂，可供研究界访问，提供数据存储/访问和分析工具， 支持在线表型/组学可视化。(2)在不同数据集的生态系统中集成数据 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 医疗保险和医疗补助服务以及私人保险公司数据）、研究测试、生物标志物和在线存储库 去识别的图像（例如，超声心动图、MRI扫描、ECG描记）。(3)打造全方位 使用尤里卡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）参与者的通信门户（具有 患者查看自己的个人数据和测试结果，并汇总HeartShare汇总数据）;以及数据 家庭设备、传感器和移动的健康应用的集合。

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.