The DRRU is dedicated to ensuring the wellbeing of the young people who take part in our research. We are also committed to engaging with young people as active participants and collaborators in our research, who help shape our study protocols.
We explain to parents/guardians and young people what taking part in our studies will involve. They are both given an information sheet to take away with them. These are designed in collaboration with a young people’s advisory group to ensure that the study purpose and what is involved is clear to everyone taking part. We always provide opportunities to discuss any questions or concerns.
Following this, of those families interested in taking part we collect informed assent from the young person as well as informed consent from their parent or guardian. Parents and young people are reminded that they are free to withdraw from our studies at any point, without providing an explanation. For us, it is paramount that taking part in research is a positive and stimulating experience. We also ensure that all of our study protocols are fully approved by the UCL Ethics Committee and follow current safeguarding best practice.
We aim to make having a brain scan fun and enjoyable.
The process is explained to each young person, and we ensure that they fully understand before they give assent to take part. Each young person is shown the scanner so that they can get a sense of what it will feel and sound like.
Throughout the studies, a young person can have a break or stop, including during a scan. We communicate with them using a simple intercom system, and the young person is given a button to press if at any point they wish to stop the scan.
One of the highlights of taking part in our research that many young people appreciate is the chance to see a picture of their own brain, which they can also take home with them.
“It’s been fun and exciting. Interesting and a good project. I got to see my brain and how it functions. All round it was just exciting!” – Tiolu, aged 16.
“It was great to be part of such an interesting project.” – Bernard, aged 13.