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

NombuyiseloMofokeng; Tongai GMaponga; Marijevan Schalkwyk; SusanHugo; Molefi DanielMorobadi; SabeehahVawda; LeaneBadenhorst; Cloetevan Vuuren; Christovan Rensburg; WolfgangPreiser; +8 more... JantjieTaljaard; SuWang; VeronicaMiller; Dan Wu ORCID logo; Joseph D Tucker ORCID logo; Janet Seeley ORCID logo; DominiqueGoedhals; Philippa CMatthews; (2023) Barriers that prevent adults living with HBV infection from participating in clinical research: experience from South Africa. Journal of Virus Eradication, 9 (1). 100317-. ISSN 2055-6640 DOI: 10.1016/j.jve.2023.100317
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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.



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