利用大型异构数据评估撒哈拉以南非洲关键人群中艾滋病毒应对的潜在影响:博洛卡数据存储库倡议的协议。

IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES JMIR Research Protocols Pub Date : 2025-01-22 DOI:10.2196/63583
Refilwe Nancy Phaswana Mafuya, Edith Phalane, Amrita Rao, Kalai Willis, Katherine Rucinski, K Alida Voet, Amal Abdulrahman, Claris Siyamayambo, Betty Sebati, Mohlago Seloka, Musa Jaiteh, Lerato Lucia Olifant, Katharine Journeay, Haley Sisel, Xiaoming Li, Bankole Olatosi, Neset Hikmet, Prashant Duhoon, Francois Wolmarans, Yegnanew A Shiferaw, Lifutso Motsieloa, Mashudu Rampilo, Stefan Baral
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引用次数: 0

摘要

背景:南非没有集中的艾滋病毒监测系统来存储关键人群(KPs)数据,包括男同性恋者和其他男男性行为者、女性性工作者、跨性别者、吸毒者和被监禁者,尽管他们感染和传播艾滋病毒的风险高于一般人群。许多利益相关者正在以较小的规模收集KPs数据,并在孤岛中进行管理。目前有机会利用各种数据,如经验数据、背景数据、观察数据和规划数据,来评估南非农村社区应对艾滋病毒的潜在影响。目的:本研究旨在利用和利用KPs中关于艾滋病毒的大量异构数据,并对其进行协调和分析,从而为撒哈拉以南非洲地区有针对性的艾滋病毒应对提供信息,以产生更大的影响。方法:Boloka数据存储库计划有5个阶段。将有广泛的利益相关者参与,以促进数据的获取(阶段1)。通过这些参与,将整理不同的数据类型(阶段2)。将对数据进行过滤和筛选,以实现高质量的分析(阶段3)。整理后的数据将存储在Boloka数据存储库中(阶段4)。Boloka数据存储库将向利益相关者和授权用户开放(阶段5)。该议定书由南非医学研究理事会在外部同行评审后资助(2022年12月)。该研究获得了约翰内斯堡大学(UJ)研究伦理委员会的初步伦理批准(2022年5月)、续期(2023年6月)和修订(2024年7月)。研究团队已被招募、入职并接受非网络网络伦理培训(2023年1月)。目前和潜在的数据合作伙伴名单已编制(2023年1月至今)。与多个数据合作伙伴签署了数据共享或用户协议(截至2023年8月)。调查和常规数据已经并正在保护(2023年1月5日)。在(2024年9月),我们收到了加纳男性研究数据。泛非流行病研究中心与围产期艾滋病毒研究股之间的数据转移协议已于2024年10月敲定,我们预计将于2024年12月之前收到数据。总共有7篇摘要正在进行中,其中1篇摘要已完成分析,预计将于2024年1月初将全文提交给同行评议期刊。截至2025年3月,我们预计将提交剩余的6篇完整文章。结论:一个真正“完整”的数据基础设施,系统和严格地整合各种数据,不仅可以提高我们对当地流行病的了解,还可以改善艾滋病毒干预措施和政策。此外,它将为未来的研究方向提供信息,并成为南非和撒哈拉以南非洲流行病学和公共卫生培训的一个令人难以置信的体制机制。国际注册报告标识符(irrid): DERR1-10.2196/63583。
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Harnessing Big Heterogeneous Data to Evaluate the Potential Impact of HIV Responses Among Key Populations in Sub-Saharan Africa: Protocol for the Boloka Data Repository Initiative.

Background: In South Africa, there is no centralized HIV surveillance system where key populations (KPs) data, including gay men and other men who have sex with men, female sex workers, transgender persons, people who use drugs, and incarcerated persons, are stored in South Africa despite being on higher risk of HIV acquisition and transmission than the general population. Data on KPs are being collected on a smaller scale by numerous stakeholders and managed in silos. There exists an opportunity to harness a variety of data, such as empirical, contextual, observational, and programmatic data, for evaluating the potential impact of HIV responses among KPs in South Africa.

Objective: This study aimed to leverage and harness big heterogeneous data on HIV among KPs and harmonize and analyze it to inform a targeted HIV response for greater impact in Sub-Saharan Africa.

Methods: The Boloka data repository initiative has 5 stages. There will be engagement of a wide range of stakeholders to facilitate the acquisition of data (stage 1). Through these engagements, different data types will be collated (stage 2). The data will be filtered and screened to enable high-quality analyses (stage 3). The collated data will be stored in the Boloka data repository (stage 4). The Boloka data repository will be made accessible to stakeholders and authorized users (stage 5).

Results: The protocol was funded by the South African Medical Research Council following external peer reviews (December 2022). The study received initial ethics approval (May 2022), renewal (June 2023), and amendment (July 2024) from the University of Johannesburg (UJ) Research Ethics Committee. The research team has been recruited, onboarded, and received non-web-based internet ethics training (January 2023). A list of current and potential data partners has been compiled (January 2023 to date). Data sharing or user agreements have been signed with several data partners (August 2023 to date). Survey and routine data have been and are being secured (January 5, 2023). In (September 2024) we received Ghana Men Study data. The data transfer agreement between the Pan African Centre for Epidemics Research and the Perinatal HIV Research Unit was finalized (October 2024), and we are anticipating receiving data by (December 2024). In total, 7 abstracts are underway, with 1 abstract completed the analysis and expected to submit the full article to the peer-reviewed journal in early January 2024. As of March 2025, we expect to submit the remaining 6 full articles.

Conclusions: A truly "complete" data infrastructure that systematically and rigorously integrates diverse data for KPs will not only improve our understanding of local epidemics but will also improve HIV interventions and policies. Furthermore, it will inform future research directions and become an incredible institutional mechanism for epidemiological and public health training in South Africa and Sub-Saharan Africa.

International registered report identifier (irrid): DERR1-10.2196/63583.

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自引率
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发文量
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