Children and clinical trials

Children can take part in CF clinical trials. They may be able to take part in clinical trials aimed at a wide age group or a specific trial for children. You can find a list of current trials on the Trials Tracker.

Babies and children under 16 years cannot give informed consent and will need an appropriate person to consent for them. Children and young people should be involved in the decision-making whenever possible. 

Some parents can struggle with the decision of whether to enroll their child in a clinical trial, and it is understandable to have concerns. 

Deciding to take part in a trial or not is about making the best decision for your family. Sometimes it comes down to timing and saying no isn’t the wrong thing if that is the right decision for your family.

Read Esther's blog

Read our tips on what to consider when joining a trial

Clinical trials are carefully controlled, regulated and organised to minimise the risk to people taking part. They are now safer than ever. 

Find out more about clinical trial safety

Having conversations about clinical trials can help your child learn more about CF, feel okay about asking questions and think about what part they could play in future medical developments. Even to adults, clinical trials can seem daunting, and explaining them to younger children can feel like a challenge. It can help to remember that your role is to be a parent, not an expert in clinical trials! 

Parents of children with CF and a CF psychologist have helped us put together the following tips on talking to your children about trials.

Tips on talking to children about trials

Set the scene: 

Pick a time when you won’t be distracted (avoid bedtimes and mealtimes!). If you find it hard to talk about CF, pick a time that feels manageable for you too. 

Start the conversation: 

Children take cues from their parents, so try to keep your tone light and curious. Start by finding out what they know about how medicines are made, use language they’ll understand and don’t try to cover everything in one go. You may end up talking about trials over a few days. 

Answer questions: 

Listen to the whole question and try to answer it without adding lots more information. If you don’t know the answer, great! That helps children to feel okay about not knowing things, and you can ask your child’s CF team the question together. It can be useful to have a book to write questions in. 

Check understanding: 

Open questions like ‘What do you think about being a part of a clinical trial?’ can encourage talking and help you spot any confusion. Asking children to explain things or joining them in learning is a good way to normalise the topic and reassure them, eg ‘Making new medicines is new to me too, maybe you can help me by explaining how you think it works?’

Use age-appropriate language.

Our clinical trials glossary can help you explain complicated terms. Our Comic Book (see below) has been designed to help younger children understand trials.

Our Junior Agents Comic Book is designed to introduce primary-aged children with CF to clinical trials. It explains what clinical trials are, what taking part in one might involve and how getting involved in one could help children with CF like them. 

In the comic, ‘Agent S’ introduces a clinical trial as a ‘mission’ and explains how she became a 'Junior Agent' by helping to develop new medicines for cystic fibrosis. 

We developed this to encourage children to see clinical trials as something interesting and exciting, and to show them that their condition gives them special skills that could help them and others. You may want to read the comic with your child to introduce the idea of clinical trials, to allow you to answer any questions and to find out what they already know. 

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