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 us 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 children’s cancers, and in other medical conditions as well.

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, often a lot of the treatments they receive may be part of a trial to ensure that they have access to the most up to date treatments for that particular condition.

Participating in clinical trials

What are the benefits of your child taking part in research?

They may receive a new treatment for their tumour type that is only available on 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 being part of a trial

Clinical research can at times involve risks

There may be unexpected side effects, especially in early (Phase I trials). However your child would be closely monitored
The treatments may involve more hospital visits and more investigations than your child otherwise would have had.
This may take away from quality time that you may be able to spend with your child.

Sometimes, this may be hard to weigh up when the benefits in terms of outcomes are uncertain when taking part in a trial.

Ultimately, whether you participate in trials is a hard decision, but is often done by families who have already explored all conventional treatment options.

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.

For more information on participating in clinical trials, see Taking part in clinical trials by the Children's Cancer and Leukaemia group. They have produced an excellent booklet with further information.