Barriers that prevent adults living with HBV infection from participating in clinical research: experience from South Africa

IF 3.5 4区 医学 Q2 IMMUNOLOGY
Nombuyiselo Mofokeng , Tongai G. Maponga , Marije van Schalkwyk , Susan Hugo , Molefi Daniel Morobadi , Sabeehah Vawda , Leane Badenhorst , Cloete van Vuuren , Christo van Rensburg , Wolfgang Preiser , Jantjie Taljaard , Su Wang , Veronica Miller , Dan Wu , Joseph D. Tucker , Janet Seeley , Dominique Goedhals , Philippa C. Matthews
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引用次数: 1

Abstract

High profile international goals have been set for the elimination of hepatitis B virus (HBV) infection as a public health threat by the year 2030. Developing and expanding equitable, accessible translational HBV research programmes that represent real-world populations are therefore an urgent priority for clinical and academic communities. We present experiences and insights by an expert interdisciplinary group focusing on barriers that impede adults living with HBV infection from participating in clinical studies. Our viewpoint describes barriers we have identified through working in a variety of settings across South Africa, including lack of education and awareness, experiences of stigma and discrimination, challenges for governance and data management, and a burden of complex morbidity. Through identifying these challenges, we propose solutions and interventions, highlight new approaches, and provide a framework for future research.

阻碍成年HBV感染者参与临床研究的障碍:来自南非的经验
为到2030年消除作为公共健康威胁的乙型肝炎病毒(HBV)感染,制定了备受瞩目的国际目标。因此,发展和扩大代表现实世界人群的公平、可获得的转化HBV研究计划是临床和学术界的当务之急。我们介绍了一个跨学科专家小组的经验和见解,该小组专注于阻碍感染HBV的成年人参与临床研究的障碍。我们的观点描述了我们在南非各地的各种环境中工作时发现的障碍,包括缺乏教育和意识、耻辱和歧视的经历、治理和数据管理的挑战,以及复杂的发病率负担。通过识别这些挑战,我们提出了解决方案和干预措施,强调了新的方法,并为未来的研究提供了框架。
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来源期刊
Journal of Virus Eradication
Journal of Virus Eradication Medicine-Public Health, Environmental and Occupational Health
CiteScore
6.10
自引率
1.80%
发文量
28
审稿时长
39 weeks
期刊介绍: The Journal of Virus Eradication aims to provide a specialist, open-access forum to publish work in the rapidly developing field of virus eradication. The Journal covers all human viruses, in the context of new therapeutic strategies, as well as societal eradication of viral infections with preventive interventions. The Journal is aimed at the international community involved in the prevention and management of viral infections. It provides an academic forum for the publication of original research into viral reservoirs, viral persistence and virus eradication and ultimately development of cures. The Journal not only publishes original research, but provides an opportunity for opinions, reviews, case studies and comments on the published literature. It focusses on evidence-based medicine as the major thrust in the successful management of viral infections.The Journal encompasses virological, immunological, epidemiological, modelling, pharmacological, pre-clinical and in vitro, as well as clinical, data including but not limited to drugs, immunotherapy and gene therapy. It is an important source of information on the development of vaccine programs and preventative measures aimed at virus eradication.
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