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.
The outcomes of a clinical research directly 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, such as in Tuberculosis services, where human and technological resources for research may be rare. The use of Electronic Data Capture systems, such as REDCap and KoBotoolbox, can help to mitigate such risks and to enable a reliable environment to conduct health research and promote results dissemination and data reusability. The proposed solution was based on needs pinpointed by researchers, considering the lack of an embracing solution to conduct research in low resources environments. The REDbox framework was built to enhance data collection, management and sharing in tuberculosis research, while providing a better user experience. The relevance of this article lies in the innovative approach to support TB research by combining existing technologies and developing support features. When focusing on positive aspects of each tool, it is possible to underpin tuberculosis research by improving data collection, management capability and security. Furthermore, the aggregation of meaning in raw data helps to promote the quality and the availability of research data.
Background: The outcomes of a clinical research directly 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, such as in Tuberculosis services, where human and technological resources for research may be rare. The use of Electronic Data Capture systems can help to mitigate such risks and to enable a democratic environment to conduct health research and promote results dissemination and data reusability. Methods: The proposed solution was based on needs pinpointed by researchers, considering the lack of an embracing solution to conduct research in low resources environments. REDCap was used for research data storing and its management. KoBoToolbox enables forms building and online and offline data collection. Semantic annotation is applied for promoting data integration and availability. Results: The REDbox framework was built to enhance data collection, management and sharing in tuberculosis research, while providing a better user experience. Metadata was defined to enable the integration of both systems. A converter module enables compatibility of forms in both systems. Data collected in KoBoToolbox forms are instantly submitted to an ETL processor, which extracts and transforms the data to be loaded into REDCap. A data quality module facilitates the management of data by reducing the workload of time-consuming and delicate tasks. A service provides practical tools to enhance the use of ontologies and support the continuous integration of different data sources.Conclusions: The relevance of this article lies in the innovative approach to support TB research during collection, management and dissemination phases, which is often carried out in contexts with few human and technological resources. REDCap presents a better approach to the whole research life cycle, but has some usability concerns. On the other hand, KoBoToolbox natively works online or offline, without any additional software. Therefore, when focusing on positive aspects of each tool, it is possible to underpin tuberculosis research by improving data collection, management capability and security. Furthermore, the aggregation of meaning in raw data helps to promote the quality and the availability of research data.
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