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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:

  • those who acquired HIV from birth
  • those who are HIV negative but either have a parent with HIV or live in the same household as a study participant who is living with HIV.

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, 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 resources which report on the outcomes with the study team from the MCR Clinical Trials Unit at University College London.

You can learn about the study's findings through the short film and document below.

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Youth Trials Board

CHIVA has been working with Penta ID to deliver a UK Youth Trials Board (YTB) as part of a global programme enabling young people's participation in clinical trials.

The Youth Trials Board (YTB) Project is a three-year pilot to develop a model of youth participation in paediatric HIV clinical trials. YTBs aim to ensure young people's meaningful and influential involvement in how clinical trials are designed, developed and delivered. The pilot has engaged young people aged 15-21 years who were living with HIV in four countries, involving local organisations:

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

As a sub-study of the ODYSSEY trial, the project has been closely involved with that trial. The YTBs have 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. Some members attended international meetings such as the World Health Organization's HIV department seminar in Geneva and the AIDS 2018 conference in Amsterdam.

YTB members 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 aimed at young people.

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

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