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Cystic Fibrosis Trust

Clinical trials for young people

Find out how you can get involved in research if you are a young person with cystic fibrosis.

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.

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:

Myth-busting research and clinical trials

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.

  

Making the right health research decisions

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.

  

Trials Tracker

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

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:

Get Involved

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, clinicaltrials@cysticfibrosis.org.uk.

Questions to ask your CF team

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.


Clinical Trials Digital Hub

We've got everything you might want to know about clinical trials on our Clinical Trials Digital Hub, including resources, information about taking part and more!

Explore

Meet the team

There are a number of different professionals involved in making sure clinical trials are as successful as possible.

Find out more

Taking part

Find out more about taking part in a clinical trial. We've got information on everything from trial types to eligibility and consent as well as links to loads of useful resources.

Find out more