Youth Trial Board (YTB) started in 2018 as a pilot to bridge the gap between researchers and the research participants involved in clinical trials, the challenges they face such that people’s health can be improved as well as their medication.
This project started with nine board members who represented three clinical trial sites namely Makerere University-Johns Hopkins University (MU-JHU) Research Collaboration/MU-JHU Care LTD, Joint Clinical Research Centre and Baylor Uganda. Currently, this project has six members who are spear-led by the YTB coordinator Charles Kiganda and supervised by Dr. Grace Miriam Ahimbisibwe and Juliane Etima (MU-JHU Psychosocial Division Director).
YTB members have regular meetings both physical and online, where they discuss key issues affecting young people involved in clinical trials. Some of the topics discussed at previous meetings include:
- The definition of a clinical trial
- The randomization process
- Consent and assent forms
It conducts stakeholder meetings with key people involved in clinical trials such as research leads, Institutional Review Boards (IRBs) to make sure that young people’s involvement in clinical trials is a priority rather than an option.
YTB hopes to be a voice for the voiceless young people involved in clinical trials both on the local and international platforms through various workshops and conferences. We have created a platform for the voiceless young people involved in clinical trials. It has designed Dolutegravir antiretroviral medication messages talking about the risk of Dolutegravir in pregnancy.
Currently, YTB exists in Uganda, Zimbabwe, South Africa, Russia and UK and we hope that it can be expanded to other countries conducting child and adolescent research.
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