Participating in clinical trials

Many children and young people with cancer receive their treatment as a part of a clinical trial. A trial is a medical research study that helps to test new treatments and ways of managing symptoms or diagnosing conditions.

Trials are extremely important to ensure that progress continues to be made in treating children with cancer.

Usually, there is very clear guidance setting out who is eligible for a trial. Typically, children will need to meet a long list of criteria to be eligible.

In the case of children with rhabdoid tumours and other very rare cancers, is likely that a lot of the treatments they receive will be part of a trial to ensure that they have access to the most up-to-date therapies.

Potential benefits of taking part in clinical trials

They may receive a new treatment for their tumour type that is only available as part of a trial
The new treatment may be more effective than standard treatment
The study may potentially help other children in the future as well as your child
Treatment is closely monitored as part of a trial
The study may be a chance to meet others in a similar situation.

Potential risks or disadvantages of your child taking part in a clinical trial

Clinical research can at times involve risks
There can be unexpected side effects, especially in early (Phase I trials). However, your child will be closely monitored
The treatments can involve more hospital visits and investigations than your child would otherwise have received
This can take away from quality time that you have with your child when their outcomes are uncertain.

Making a decision

Whether your child should participate in a clinical trial is a hard decision, but for some children, it is an extremely good option.

It is important to discuss all of your concerns and questions with your child’s consultant to ensure you are able to make a fully informed choice.

What will happen next?

These links will take you through some of the possible investigations and procedures your child may need and then some of the treatments they may receive.