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REDbox:一个用于结核病研究中数据收集和管理的全面语义框架。

REDbox: a comprehensive semantic framework for data collection and management in tuberculosis research.

机构信息

Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto, Brazil.

School of Technology and Management, Polytechnic Institute of Leiria, Leiria, Portugal.

出版信息

Sci Rep. 2023 May 11;13(1):7686. doi: 10.1038/s41598-023-33492-6.

Abstract

Clinical research outcomes depend on the correct definition of the research protocol, the data collection strategy, and the data management plan. Furthermore, researchers often need to work within challenging contexts, as is the case in tuberculosis services, where human and technological resources for research may be scarce. Electronic Data Capture Systems mitigate such risks and enable a reliable environment to conduct health research and promote result dissemination and data reusability. The proposed solution is based on needs pinpointed by researchers, considering the need for an accommodating solution to conduct research in low-resource environments. The REDbox framework was developed to facilitate data collection, management, sharing, and availability in tuberculosis research and improve the user experience through user-friendly, web-based tools. REDbox combines elements of the REDCap and KoBoToolbox electronic data capture systems and semantics to deliver new valuable tools that meet the needs of tuberculosis researchers in Brazil. The framework was implemented in five cross-institutional, nationwide projects to evaluate the users' perceptions of the system's usefulness and the information and user experience. Seventeen responses (representing 40% of active users) to an anonymous survey distributed to active users indicated that REDbox was perceived to be helpful for the particular audience of researchers and health professionals. The relevance of this article lies in the innovative approach to supporting tuberculosis research by combining existing technologies and tailoring supporting features.

摘要

临床研究结果取决于研究方案的正确定义、数据收集策略和数据管理计划。此外,研究人员通常需要在具有挑战性的环境中工作,就像在结核病服务中一样,那里的研究人力和技术资源可能很匮乏。电子数据采集系统可以降低这些风险,并为开展健康研究以及促进研究成果传播和数据重用提供可靠的环境。所提出的解决方案基于研究人员指出的需求,考虑到需要一种适应性强的解决方案来在资源匮乏的环境中开展研究。REDbox 框架旨在促进结核病研究中的数据收集、管理、共享和可用性,并通过用户友好的基于网络的工具改善用户体验。REDbox 结合了 REDCap 和 KoBoToolbox 电子数据采集系统的元素以及语义学,提供了满足巴西结核病研究人员需求的新有价值工具。该框架已在五个跨机构、全国性的项目中实施,以评估用户对系统有用性以及信息和用户体验的看法。向活跃用户分发的匿名调查收到了 17 份回复(占活跃用户的 40%),表明 REDbox 被认为对研究人员和卫生专业人员这一特定受众很有帮助。本文的意义在于通过结合现有技术和定制支持功能来支持结核病研究的创新方法。

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