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 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, 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 treatments for that particular condition.

Potential benefits of your child 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 had.

  • This can take away from quality time that you have with your child. Sometimes, this can be hard to weigh up when the benefits in terms of outcomes are uncertain.

Ultimately, whether your child should participate in a clinical trial is a hard decision, but for some children, it is an extrememely 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. For more information on participating in clinical trials, see Taking part in clinical trials from the Children's Cancer and Leukaemia group. They have produced an excellent booklet with further information.