Clinical trials for young people
Before any new medicine or treatment can be given to people with CF, it has to go through a number of ‘clinical trials’. This means it’s tried out by people just like you, living with CF today.
Clinical trials aren’t just for adults – people in their teens and even younger can take part too. Young people with CF have helped us put together the tips below to help you understand more about clinical trials and whether they’re right for you.
We have separate information on clinical trials for children.
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Learn more about clinical trials
GenerationR is a network of young persons' advisory groups across the UK that support research for young people. They have lots of videos and games to help understand more about research and clinical trials for all sorts of conditions – not just CF:
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Deciding to take part in a trial
Before you think about joining a clinical trial, it’s a good idea to find out more everything you can about the trial so you know what to expect. As every trial is different, you will have the chance to ask your CF team plenty of questions before taking part:
- What is the trial for?
- How long will the trial take?
- How many extra visits to the hospital will I have to make?
- Will I have to miss school or meeting up with friends?
- What do I have to do as part of the trial?
- Will I see the same doctor or nurse from start to finish?
Asking questions about a trial and taking the time to think and discuss with your family and friends doesn’t mean you have to take part. Even if you start a trial and then change your mind, you can leave the trial at any time. Taking part in a trial will always be your choice.
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Take a look at our Trials Tracker
We list clinical trials that are running in the UK on our Trials Tracker. Take a look to see what trials you may be interested in, how old you have to be to take part or if your CF centre is taking part in any trials. You can use the filters on the Trials Tracker to filter trials by age.
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Other ways to be involved in clinical trials
Researchers and scientists have amazing ideas about how to make new medicines or treatments, but they don’t know what it’s like to live with CF. They don’t know how you feel about taking a medicine, if it is difficult to fit into your day, or if it stops you doing the things you’d rather be doing like meeting friends, going to school or playing sport.
When researchers plan their trial, they need to know if the plan works as well as the medicine and need young people’s feedback. This is known as community involvement.
If you would like to help shape new treatments by sharing your thoughts and experiences of living with CF, message our Involvement Group.
It’s made my life easier, and I feel like a weight has been lifted off my chest. Because my health is now stable, my family and I can now plan further into the future for holidays and other days out. When I look back, I now realise how poor my health was, even though it didn’t seem it at the time.
- Lola, who has CF
It would honestly mean the world to me, my family and my loved ones if the clinical research helped to bring out more effective treatments for cystic fibrosis… I’d say to anyone thinking about going on a trial to ask your doctor and then ask family what their thoughts are. It’s definitely worth it and you can always opt out if you change your mind.
- Caitlin, who has CF
Children and clinical trials
Find out more about whether children can take part in trials and how to talk with your child about trials.
Taking part in clinical trials
Learn more about what's involved in clinical trials and how to decide if taking part is right for you.
Clinical trials for people with CF
Find out more about how trials work, what’s involved in taking part and how to find current trials.