Sankofa pediatric HIV disclosure intervention cyber data management: building capacity in a resource-limited setting and ensuring data quality.
Sankofa pediatric HIV disclosure intervention cyber data management: building capacity in a resource-limited setting and ensuring data quality.
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DOI：
10.1080/09540121.2015.1023246
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发表时间：
2015
期刊：
影响因子：
1.7
通讯作者：
Paintsil E
中科院分区：
文献类型：
--
作者：
Catlin AC;Fernando S;Gamage R;Renner L;Antwi S;Tettey JK;Amisah KA;Kyriakides T;Cong X;Reynolds NR;Paintsil E
在资源有限的情况下，儿科艾滋病毒披露的流行率很低。需要创新的、对文化敏感的、以患者为中心的披露方法。考虑到获取、清理和存储临床研究数据的挑战，在资源有限的环境中进行此类研究并不容易。为了克服其中一些挑战，桑科法儿科披露干预行动采用了一种用于数据捕获和分析的交互式网络基础设施。桑科法项目数据库系统建立在HUBZERO网络基础设施(https://hubzero.org)，，一个开源软件平台)上。中心数据库组件支持：(1)数据管理--“数据库”组件创建、配置和管理数据库访问、备份、储存库、应用程序和访问控制；(2)数据收集--“表单”组件用于构建定制的Web案例报告表单，该表单包含公共数据元素，并包括定制的表单提交处理，以在数据存储到数据库时处理错误检查、数据验证和数据链接；以及(3)数据浏览--“DataViewer”组件为用户提供了查看、搜索、排序、导航、浏览、绘制地图、绘制图表、可视化、聚合、向下钻取、计算和从数据库导出数据的强大方法。Sankofa网络数据管理工具支持用户友好、安全和系统地收集所有数据。我们已经筛选了400多名儿童保育员二人组，并招募了近300名儿童保育员二人组，拥有数万个数据元素。数据视图成功地支持了桑科法项目的所有数据勘探和分析需求。此外，事实证明，网站查询和查看数据摘要的能力是收集完整和准确数据的动力。该数据系统具有电子数据捕获工具的所有所需属性。它还提供了在资源有限的情况下建立数据管理能力的额外优势，因为它具有创新的数据查询和摘要视图，并可由数据管理团队提供实时支持。
Prevalence of pediatric HIV disclosure is low in resource-limited settings. Innovative, culturally sensitive, and patient-centered disclosure approaches are needed. Conducting such studies in resource-limited settings is not trivial considering the challenges of capturing, cleaning, and storing clinical research data. To overcome some of these challenges, the Sankofa pediatric disclosure intervention adopted an interactive cyber infrastructure for data capture and analysis. The Sankofa Project database system is built on the HUBzero cyber infrastructure (https://hubzero.org), an open source software platform. The hub database components support: (1) data management – the “databases” component creates, configures, and manages database access, backup, repositories, applications, and access control; (2) data collection – the “forms” component is used to build customized web case report forms that incorporate common data elements and include tailored form submit processing to handle error checking, data validation, and data linkage as the data are stored to the database; and (3) data exploration – the “dataviewer” component provides powerful methods for users to view, search, sort, navigate, explore, map, graph, visualize, aggregate, drill-down, compute, and export data from the database. The Sankofa cyber data management tool supports a user-friendly, secure, and systematic collection of all data. We have screened more than 400 child–caregiver dyads and enrolled nearly 300 dyads, with tens of thousands of data elements. The dataviews have successfully supported all data exploration and analysis needs of the Sankofa Project. Moreover, the ability of the sites to query and view data summaries has proven to be an incentive for collecting complete and accurate data. The data system has all the desirable attributes of an electronic data capture tool. It also provides an added advantage of building data management capacity in resource-limited settings due to its innovative data query and summary views and availability of real-time support by the data management team.