Data Portal Core

数据门户核心

• 批准号: 10488277
• 负责人: Sanjiv J Shah
• 金额: $ 108.47万
• 依托单位: NORTHWESTERN UNIVERSITY AT CHICAGO
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-13 至 2026-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10488277
• 关键词: Adipose tissue; Affect; Applied Research; Biological Markers; Caring; Centers for Disease Control and Prevention (U.S.); Clinical Sciences; Clinical Trials; Communication; Communities; Complex; Consumption; Data; Data Collection; Data Science; Data Set; Data Sources; Data Storage and Retrieval; Development; Devices; Doctor of Philosophy; EFRAC; Echocardiography; Ecosystem; Electrocardiogram; Electronic Health Record; Ensure; FAIR principles; Failure; Fast Healthcare Interoperability Resources; Funding; Goals; Health; Heart; Heart failure; Heterogeneity; Home; Image; Individual; Informatics; Infrastructure; Institutes; Insurance Carriers; Internet; Investigation; Kidney; Lead; Leadership; Logical Observation Identifiers Names and Codes; Lung; MRI Scans; Medicine; Mobile Health Application; Multiomic Data; National Heart, Lung, and Blood Institute; Online Systems; Participant; Patients; Phenotype; Privatization; Registries; Research; Research Personnel; Research Priority; Resources; Skeletal Muscle; Strategic vision; Syndrome; Test Result; Testing; Therapeutic; Trans-Omics for Precision Medicine; Translational Research; Translations; Treatment Failure; United States Agency for Healthcare Research and Quality; United States Centers for Medicare and Medicaid Services; United States National Institutes of Health; Universities; Update; Visualization; advanced analytics; analytical tool; augmented intelligence; base; biobank; catalyst; clinical investigation; cloud based; cohort; data de-identification; data integration; data portal; data resource; data visualization; effective therapy; frailty; frontier; health data; improved; interoperability; mHealth; medical schools; member; mobile application; multiple chronic conditions; multiple omics; novel; novel strategies; online repository; patient engagement; preservation; programs; remote consent; sensor; stem; tool; web app; working group

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.

项目概要 鉴于射血分数保留型心力衰竭 (HFpEF) 综合征的复杂性，存在一个主要问题 未满足的需求是创建一个可以集成各种不同数据源的综合资源 更大的科学界的消费，一种相对“孤立”的科学研究方法。 迄今为止，HFpEF 尚未取得治疗进展；因此，我们必须转向新的方法，包括 向世界各地的研究人员更广泛地共享去识别化数据，以便进行更多新的调查 由于这些原因，HFpEF 临床研究的一个重大进展将是开发。 利用 NHLBI BioData Catalyst 资源的有效 HeartShare 数据门户； 组织和管理 HeartShare 数据，并快速将去识别化的数据提供给合格的人员进行分析； NHLBI BioData Catalyst 资源非常适合执行任务。 HeartShare 计划因为它促进可查找性、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 Trans- 精准医学组学 (TOPMed) 计划还将支持 NHLBI 的战略愿景目标。 利用数据科学领域的新兴机遇，开辟 HFpEF 研究的新领域。 提出以下具体目标来实现 HeartShare 数据门户核心的目标： (1) 创建 基于网络的综合 HeartShare 数据门户，使用 NHLBI BioData 的现有基础设施 Catalyst 可供研究界使用，提供数据存储/访问和分析工具，以及 (2) 整合不同数据集生态系统中的数据 以及适用于 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（包括通过快速医疗互操作性资源 (FHIR) 标准与 Center for 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 去识别图像（例如超声心动图、MRI 扫描、心电图描记） (3) 创建全面的图像。 使用 Eureka 平台的患者参与资源（基于网络和移动的平台）可以实现 (1) 远程同意和填写表格，(2) 参与者的沟通门户（能够 患者查看自己的个人数据和测试结果，并汇总 HeartShare 汇总数据和数据； 家庭设备、传感器和移动健康应用程序的集合。