Cresswell Fiona V, Kasibante John, Martyn Emily M, Tugume Lillian, Stead Gavin, Ssembambulidde Kenneth, Rutakingirwa Morris K, Kagimu Enock, Nsangi Laura, Namuju Carol, Ndyetukira Jane F, Ahimbisibwe Cynthia, Kugonza Florence, Sadiq Alisat, Namudde Alice, Dobbin Joanna, Srishyla Diksha, Quinn Carson, Kabahubya Mable, Muzoora Conrad, Watiti Stephen, Meya David B, Elliott Alison M
Research Department, Infectious Diseases Institute, Kampala, 22418, Uganda.
Clinical Research Department, London School of Hygiene and Tropical Medicine, London, WC1E 7HT, UK.
AAS Open Res. 2020 Oct 29;3:33. doi: 10.12688/aasopenres.13104.2. eCollection 2020.
Over the last decade excellent progress has been made globally in HIV management thanks to antiretroviral therapy (ART) rollout and international guidelines now recommending immediate initiation of ART in people living with HIV. Despite this, advanced HIV disease (CD4 less than 200 cells/mL) and opportunistic infections remain a persistent challenge and contribute significantly to HIV-associated mortality, which equates to 23,000 deaths in Uganda in 2018 alone. Our Meningitis Research Team based in Uganda is committed to conducting clinical trials to answer important questions regarding diagnostics and management of HIV-associated opportunistic infections, including tuberculosis and cryptococcal meningitis. However, clinical research is impossible without research participants and results are meaningless unless they are translated into benefits for those affected by the disease. Therefore, we held a series of community engagement events with the aims of 1) giving research participants a voice to share their experiences of clinical research and messages of hope around advanced HIV disease with the community, 2) dispelling myths and stigma around HIV, and 3) raising awareness about the complications of advanced HIV disease and local clinical research and recent scientific advances. The purpose of this Open Letter is to describe our community engagement experience in Uganda, where we aimed to give clinical research participants a greater voice to share their experiences. These activities build upon decades of work in HIV community engagement and lays a platform for future research and engagement activities.
在过去十年中，由于抗逆转录病毒疗法（ART）的推广以及国际指南建议对艾滋病毒感染者立即启动ART，全球在艾滋病毒管理方面取得了显著进展。尽管如此，晚期艾滋病毒疾病（CD4细胞计数低于200个/毫升）和机会性感染仍然是一个持续的挑战，并对与艾滋病毒相关的死亡率有重大影响，仅在2018年乌干达就有23000人死亡。我们位于乌干达的脑膜炎研究团队致力于开展临床试验，以回答有关艾滋病毒相关机会性感染（包括结核病和隐球菌性脑膜炎）的诊断和管理的重要问题。然而，没有研究参与者，临床研究就无法进行，而且除非将研究结果转化为对受该疾病影响者的益处，否则这些结果就毫无意义。因此，我们举办了一系列社区参与活动，目的是：1）让研究参与者有机会分享他们的临床研究经历以及关于晚期艾滋病毒疾病的希望信息；2）消除围绕艾滋病毒的误解和耻辱感；3）提高对晚期艾滋病毒疾病并发症、当地临床研究及最新科学进展的认识。这封公开信的目的是描述我们在乌干达的社区参与经历，我们旨在让临床研究参与者有更大的机会分享他们的经历。这些活动建立在数十年艾滋病毒社区参与工作的基础上，为未来的研究和参与活动奠定了平台。
