Everyone approaches clinical research with the idea of changing the world. For the researchers in the Penta ID Network, the ultimate goal is to improve the lives of children through collaboration with all actors involved, especially children and young people. So, in 2022, we developed the Quality standards for adolescent participation in clinical research decision making to ensure others in the paediatric HIV clinical research field can ethically engage young people in their trials.
We run a number of youth engagement projects and are part of consortiums where youth engagement is a key factor. We are proud of our trailblazing ‘Youth Trials Boards’ which is a model developed with young people and currently focuses on adolescents living with HIV and them having an influence in paediatric HIV clinical trials.
View Youth Engagement and Patient Participation Publications
Youth Trial Boards (YTBs) ensure that children and young people who experience a health condition, are able to participate in the decision-making of clinical trials relating to that condition. YTBs work within a child-rights and youth participation framework.
The model, currently running in South Africa, Uganda, Zimbabwe and the UK, brings together adolescent advocates, offering training and support so they can have a meaningful input in current global clinical trials. Currently YTBs are working with: ODYSSEY, D3, Breather+ and LATA. The model encourages adolescents and their peers to be proactive in studies that will shape their future and the future of their generation.
Through our work, young people remain engaged in trials and shaping science that affects them, from conception through to disseminating results.
Penta Youth Trials Boards have been running and developing since 2017, and engage young people between the ages of 15 and 19 living with HIV from diverse groups representing the demographic of their countries HIV infection. The groups hold regular meetings where they undertake activities to explore different areas of the trials such as Patient Information Sheets, communicating trial findings, explaining processes, and advocacy (including engaging Ethics Committees). The groups are also engaged in creating social media, videos, posters, infographics to disseminate trial information.
CIPHER Youth Advisors Project (CYAP)
In 2021 Penta recruited a global team of young people living with and closely affected by HIV from Africa, MENA, Europe, Southeast Asia and Latin America worked with CIPHER and IAS to review the organisations youth involvement and accessibility through a short project.
Between 2018-2020 we worked with young people from St.Petersburg and Irkutsk in Russia to ensure youth engagement in REACH, which is a cohort study to better understand the epidemiology, disease progression, treatment and outcomes of HIV, TB and HCV among pregnant women, children and adolescents in the Russian Federation. The groups (who named themselves PNG+) worked in a similar way to the YTB groups, representing the population of adolescents and engaging in activities relating to the study.
Working across sites, our experts support young people in learning and understanding clinical trials to ensure our research has ongoing engagement throughout the lifespan of the study.