Data Portal Core

数据门户核心

• 批准号: 10678960
• 负责人: Sanjiv J Shah
• 金额: $ 33.77万
• 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/10678960
• 关键词: Adipose tissue; Affect; Applied Research; Biological Markers; Caring; Clinical Sciences; Clinical Trials; Cloud Computing; Communication; Communities; Complex; Consumption; Data; Data Collection; Data Science; Data Set; Data Sources; Data Storage and Retrieval; Democracy; Development; Devices; Dimensions; Disparate; 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; Insurance Carriers; Internet; Investigation; Kidney; Lead; Leadership; Logical Observation Identifiers Names and Codes; Lung; MRI Scans; Medicine; Mobile Health Application; Multiomic Data; Muscle; National Heart, Lung, and Blood Institute; Online Systems; Participant; Patients; Phenotype; Privatization; Qualifying; Registries; Research; Research Personnel; Research Priority; Resources; Strategic vision; Syndrome; Test Result; Testing; Therapeutic; Trans-Omics for Precision Medicine; Translational Research; Translations; 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; biobank; catalyst; clinical investigation; cohort; data de-identification; data integration; data portal; data resource; data visualization; diverse data; 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; skeletal tissue; 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.

项目摘要 鉴于心力衰竭与保留的射血分数（HFPEF）综合征的复杂性，有一个主要 未满足创建一个全面的资源，可以整合各种不同的数据源 更大的科学界的消费。一种相对“孤立”的科学研究方法 迄今为止，HFPEF尚未导致热进展。因此，我们必须转向新方法，包括 在全球研究人员中广泛共享De识别的数据，以允许更多的新型调查 使用数据。由于这些原因，HFPEF临床研究的重大进步将是开发 在NHLBI Biodata催化剂资源上大写的有效的心脏数据门户；聚合， 组织和策划心脏病数据；并迅速使被取消识别的数据可用于合格的分析 世界各地的调查人员。 NHLBI Biodata催化剂资源非常适合于该任务 心莎程序程序是因为它促进可发现性，可访问性，互操作性和可重复性（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的集成 精确医学的OMICS（顶部）计划。它还将支持NHLBI的战略视觉目标 利用数据科学的新兴机会，以便在HFPEF调查中开放新的边界。我们 建议以下具体旨在实现心脏数据门户核心的目标：（1）创建一个 综合基于Web的心脏数据门户使用NHLBI Biodata的现有基础架构 催化剂，研究社区可以使用，提供数据存储/访问和分析工具，以及 支持在线表型/OMICS可视化。 （2）在不同数据集的生态系统中集成数据 以及适用于心脏夏季的数据资源，包括队列数据，临床试验数据，多摩学数据，EHR 数据（包括通过快速医疗保健互操作性资源（FHIR）与中心的集成 Medicare和Medicaid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 取消识别图像（例如，超声心动图，MRI扫描，ECG示踪）。 （3）创建一个全面的 使用Eureka平台的患者参与资源（基于Web和移动的平台）允许（1） 表格的远程同意和填写，（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，并汇总心脏概述数据）；和数据 收集家庭设备，传感器和移动健康应用程序。