Child and Adolescent Advisory Group

Funded by: 

Seed Awards

Children are a unique population with distinct psychosocial and physiological development, which is different from the adult population. Clinical trials in children are essential to developing age-specific, empirically verified therapies and interventions to determine and improve the best medical treatment.

In the majority of cases, children who participate in these clinical trials do so in a passive way where their voices are not always heard or acknowledged. In fact, there are very few child advisory committees associated with the operation of pediatric trials. Where they have been implemented such as the COMRU project with the Angkor Hospital for Children’s Young Persons Advisory Group, not only have they provided children with a voice, but they have also led to unique and eye-opening insights. Therefore, we proposed to establish a children’s advisory board for the SURE trial (a Randomized controlled trial on shortened intensified anti-tuberculosis and anti-inflammatory therapy in children with TB meningitis) recently initiated at Pham Ngoc Thach Hospital, in order to allow for valuable insights and feedback that will help us improve the trial operations.

In this project, 8 to 12 children, who consented and enrolled in the SURE trial were invited to join the Child and Adolescent Advisory Group (CAAG). The eligibility needed to be children aged from 10- 15 years, living in the surrounding area of Ho Chi Minh City, and having given assent form independently. The project involved two types of activity: firstly, data collection from the SURE study participant during their inpatient period. Secondly, one meeting with all study participants to answer a questionnaire.

Insightful data was collected through this preliminary project allowing researchers to better understand the perceptions, emotions, and expectations of sick children enrolled in a clinical trial. Children were happy to give researchers and clinicians feedback about their participation in the trial and the study procedures. This project has demonstrated that it is not only feasible to develop a YAG in Vietnam but it is also important to work further to improve study design and also increase clinical trial awareness locally, to contribute to educating the population, and to increase access to treatments.

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