Download the resources
Having a conversation with children and young people about clinical trials may not be high on your list of things to talk about, but they may be interested in knowing how they could be part of developing exciting new treatments for cystic fibrosis. Developed in collaboration with the Trust’s Youth Advisory Group (YAG) and our Community Involvement group, our new resources offer a first-step introduction, supporting parents and CF teams to start a conversation about trials with children and address some of the questions that may arise. These resources complement the comprehensive clinical trials booklet we produced with the help of the CF community in 2017, and build on the section on our Clinical Trials Hub dedicated to young people.
The new resources include a children’s comic narrated by ‘Agent S’, who introduces a clinical trial as a ‘mission’ and explains how she became a 'Junior Agent' by helping to develop new medicines for cystic fibrosis. The comic is aimed at primary aged children and is supported by a helpful ‘tips for parents’ leaflet for reading the comic with your child, put together by other parents and a CF psychologist.
“My daughter Bethan thought it was fantastic – very cool and well designed, like something you’d see on CBBC,” said Lisa, mother of Bethan (11) and Oliver (7), who both have cystic fibrosis. “Oliver went to school on World Book Day dressed as a spy, so it definitely appealed to him!” Lisa and her family were part of the Involvement group who helped develop the resources.
“The comic book is excellent and well put together,” said Neil, the Trial Coordinator at Leeds Children’s Hospital. “Big thumbs up!”
The second resource is a leaflet for teenagers, influenced by the clinical trial video written and voiced by Jade, a member of our Youth Advisory Group, explaining how clinical trials work and how young people could change the future of CF treatment. This video was commended at the British Medical Association’s Patient Information Awards in 2019.
“I think the leaflet is really good,” said Caitlin (aged 17), who lives with CF and has previously taken part in a trial. “It definitely encourages children to get involved and talk to their CF team. I also think it’s very eye-catching.”
We’re grateful to all the people with CF and parents of children who have taken part in trials for their help in creating these resources. Through your involvement, we can ensure our resources are useful and relevant for the CF community.
You can download the clinical trial comic book (3.35MB), the supporting leaflet for parents (752KB) or the leaflet for teenagers (764KB). If you would like to help shape our other resources by sharing your thoughts and experiences of living with CF, please email our Involvement Manager Lorna Allen.