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Enhancing the health and social wellbeing of children and young people living with HIV

Patient Involvement

CHIVA works closely with a number of clinical trials and studies to ensure the meaningful involvement of young people living with HIV. 

AALPHI Study

The AALPHI cohort study compared two groups of young people: young people who acquired HIV from birth, and HIV negative individuals, who have a parent with HIV or who are living in the same household as a young person living with HIV who was also in the study.

The focus of the study was on the impact of life-long HIV and long-term antiretroviral therapy (ART) on various areas of health, including cognitive function and psychosocial issues, and sexual and reproductive health. Two face-to-face interviews took place over a five year period.

The study is now complete. Young people from CHIVA worked on developing these resources which report on the study outcomes with the study team from the MCR clinical trials unit at UCL You can read about the results by watching the short film and reading the document below .

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Youth Trials Board

CHIVA are working with Penta ID to deliver a UK Youth Trials Board as part of a global programme to enable young people's participation in HIV clinical trials.

The aims of the Youth Trials boards are to ensure young people's involvement in the design, development and delivery of clinical trials in a meaningful and influential way. The three-year pilot engaged young people aged between 15-21 years living with HIV working with organisations in 4 countries.

  • Africaid Zvandiri and The University of Zimbabwe Clinical Research Centre (UZCRC)
  • CHIVA (UK)
  • Enhancing Care Foundation, King Edward VII Hospital Clinical Trials Unit, Durban, South Africa.
  • The Makerere University – John Hopkins University (MUJHU), Research Collaboration

As a sub-study of the ODYSSEY trial the project worked closely with this clinical trial, the groups also engaged in other relevant paediatric and adolescent HIV clinical trials and research.
Young people who joined the UK YTB received training on how clinical trials operate, they were introduced to different trials by the team at the MCR Clinical Trials Unit at UCL.S ome members attended international meetings, such as the World Health Organisation's HIV department seminar in Geneva, and the AIDS 2018 conference in Amsterdam.
They also met with an Ethics Committee to discuss improving young people's engagement in research with a particular focus on the development of research information for young people.

For updates on the YTB please contact: Abi.carter@chiva.org.uk.

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