Harmonist: A Scalable Toolkit for Standardizing and Coordinating Data Sharing Across International Research Networks

Harmonist：用于标准化和协调国际研究网络数据共享的可扩展工具包

• 批准号: 9453638
• 负责人: Stephany Norah Duda
• 金额: $ 65.5万
• 依托单位: VANDERBILT UNIVERSITY MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-04-06 至 2021-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9453638
• 关键词: AIDS/HIV problem; Acquired Immunodeficiency Syndrome; Address; Aptitude; Benchmarking; Caribbean region; Caring; Central America; Clinic; Clinical; Clinical Data; Cohort Studies; Collaborations; Collection; Communities; Computer software; Country; Data; Data Base Management; Data Coordinating Center; Data Element; Data Quality; Data Set; Databases; Development; Ensure; Epidemic; Epidemiology; Evaluation Research; Funding; Generations; Goals; Guidelines; HIV; Healthcare; Heterogeneity; Individual; Informatics; Institution; International; Language; Lead; Leadership; Measurement; Measures; Mentors; Mentorship; Monitor; Observational Study; Outcome; Policies; Practice Management; Procedures; Process; Research; Research Infrastructure; Research Personnel; Research Project Grants; Resources; Role; Running; Secure; Series; Site; Source; South America; Standardization; Structure; Testing; Time; Training; Universities; Update; Visual; Work; base; cohort; combat; computerized data processing; dashboard; data exchange; data management; data modeling; data sharing; data submission; database design; design; electronic data; electronic data capture system; experience; flexibility; improved; meetings; online resource; programs; support tools; symposium; tool; treatment site; web-based tool; webinar

 DESCRIPTION (provided by applicant): The International epidemiologic Databases to Evaluate AIDS (IeDEA) network assembles observational data from seven large regional research cohorts-representing over 500 HIV clinics around the world-to address research questions about the HIV/AIDS epidemic. The substantial time and effort required to harmonize data for multi-cohort collaborations with so many sites can lead to research delays, particularly given heterogeneity in data management capacity, database design, and data management. The goal of the Harmonist project is to develop the "Harmonist toolkit," a software and standards package that will enable HIV observational research networks to coordinate large-scale research projects and apply data management best practices more effectively and efficiently. The toolkit will be built as a series of flexible plugins to the widely used Research Electronic Data Capture (REDCap) system, which is in use at over 1,600 institutions in 92 countries (as of mid-2015.) Harmonist features will include web-based tools for secure data exchange, data quality checking, and scientific project and portfolio management. The Harmonist project aims to (1) design and implement the Harmonist toolkit; (2) establish a consortium of Harmonist users within the IeDEA network, while providing mentorship to IeDEA and others on the use of the software, related data standards, and best data management best practices; and (3) measure the impact of the Harmonist toolkit on the data management and workflow processes of the IeDEA network. This proposal is a collaboration between research informatics experts at Vanderbilt University and all seven regional networks of the IeDEA consortium. This partnership ensures all components of Harmonist address real-world user needs in a practical manner and provides the toolkit with a dedicated user base. We believe that these research tools can reduce the time and effort needed for critical data management and administrative tasks that underlie the role of observational HIV cohorts studying the global epidemic. A modular infrastructure, as proposed, can adapt to diverse research settings and expand to include new data types and sources as the understanding of HIV evolves. The resulting shareable software and mentoring resources will provide tangible immediate and long-term benefits to IeDEA as well as the broader HIV research community.

 描述（由申请人提供）：国际流行病学数据库评估艾滋病（IeDEA）网络收集了来自七个大型区域研究组的观察数据，代表了世界各地500多个艾滋病毒诊所，以解决有关艾滋病毒/艾滋病流行的研究问题。协调与如此多研究中心的多队列合作数据所需的大量时间和精力可能导致研究延迟，特别是考虑到数据管理能力，数据库设计和数据管理的异质性。协调员项目的目标是开发“协调员工具包”，这是一个软件和标准包，将使艾滋病毒观察研究网络能够协调大规模研究项目，并更有效和高效地应用数据管理最佳做法。该工具包将作为广泛使用的研究电子数据采集（REDCap）系统的一系列灵活插件构建，该系统已在92个国家的1，600多个机构中使用（截至2015年中期）。Harmonist的功能将包括用于安全数据交换、数据质量检查以及科学项目和投资组合管理的网络工具。协调员项目的目的是：（1）设计和实施协调员工具包;（2）在数据和评价协会网络内建立协调员用户联合会，同时就软件的使用、相关数据标准和最佳数据管理最佳做法向数据和评价协会和其他方面提供指导;（3）衡量协调员工具包对数据和评价协会网络的数据管理和工作流程的影响。该提案是范德比尔特大学的研究信息学专家与IEDEA联盟的所有七个区域网络之间的合作。这种伙伴关系确保Harmonist的所有组件都以实用的方式满足现实世界的用户需求，并为工具包提供专门的用户群。我们认为，这些研究工具可以减少关键数据管理和行政任务所需的时间和精力，这些任务是研究全球流行病的观察性艾滋病毒队列作用的基础。所提议的模块化基础设施可以适应不同的研究环境，并随着对艾滋病毒的理解的发展而扩展，以包括新的数据类型和来源。由此产生的可共享软件和指导资源将为IeDEA以及更广泛的艾滋病毒研究界提供切实的直接和长期利益。