Taking part in clinical trials isn’t just for adults. Teens, children and even babies can also take part in trials. Obviously very young children will need their parents to start a conversation about participating in a trial. But, as they get older, many young people start to show an interest in the science and purpose of trials and choose to ask their CF team about trials suitable for them. They want to get involved, know what is going on and feel part of a forward thinking group driving the focus for a better future for cystic fibrosis (CF) care and treatments.
Jade, who is a member of our Youth Advisory Group, wrote and voiced our latest clinical trials video for young people. Watch it and find out how you could change the future of cystic fibrosis treatment! This video was commended at the British Medical Association's Patient Information Awards in 2019.
Read on to explore resources about young people and clinical trials, including:
Some adults with CF told us about clinical trials they took part in when they were teenagers – you’ll probably recognise the name of some of the treatments as those you use every day now. Without their involvement, these treatments would never have been available and we could have been stuck with pancreatic powder in our food instead of easy to swallow Creon tablets!
Clinical trials stories
To help answer some of the questions you may have about clinical trials and help you to find out if it’s something you would like to take part in, here are two videos that might help:
Generation R is a National Young Persons' Advisory Group made up of local groups across the UK. Take a look at their video on clinical trial myth busters.
Explore some of the questions and issues that might be raised when a young person is invited to take part in clinical research in this video from the Nuffield Council on Bioethics and Mosaic Films.
You can search our Trials Tracker to see what trials you may be suitable for, and you can even search for trials by age groups.
Generation R make lots of videos and games looking at research and clinical trials for all sorts of conditions, not just CF – here are some more that might be interesting to you:
If you want to find out more about clinical trials and get involved without actually having to take part in a trial, please get in touch. Researchers and doctors want to hear what young people think about the trials they are planning and how you think they should find out if new treatments work better than those you have now. Let us know you’re interested by emailing Lorna Allen, firstname.lastname@example.org.
Every trial is different so here are some questions you might want to ask you CF team:
All these questions and more would be answered for you before you agreed to take part. Even then, only once you give your consent would the trial begin.