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Enrolling your child in a clinical trial

Most children with cancer are offered treatment through a clinical trial at some time during their illness, and many of them participate. But it can be hard to decide if a clinical trial will be the best treatment for your child.

Why a clinical trial for my child?

All of the successful treatments for cancer and other diseases in children were first tested in clinical trials. Talk to your child’s healthcare team or the clinical trials team to find out more about the clinical trial they recommend for your child and why.

The main reason for your child to be in a clinical trial is that the treatment being tested may work better than the standard treatments that are accepted and commonly used for the type of cancer they have. But there is no guarantee that the treatment being tested will work for your child, even if it works for other children, or that it will be as effective as the researchers think it will be.

Along with hoping that a clinical trial will be the best treatment for their child, some parents find it worthwhile to participate because doing so contributes to what we know about cancer in children. When the trial is done – no matter what the results are – there will be new information to help other children and their families in the future.

Clinical trials in children also help researchers understand more about how treatments affect children. Most drugs are tested in adults, but children are not “little” adults. Only through research can we find out if drugs work as well in children, what kind of doses are needed and if they are safe. It’s also important to understand how treatments may affect children’s growing bodies and brains. Research has also led to different forms of medicines that are easier for children to take, such as liquids or chewable tablets.

Informed consent and assent

The clinical trial team must have informed consent for your child. Informed consent means that you or you and your child understand the potential benefits, risks and limitations of the clinical trial. They must make sure that you and your child fully understand:

  • the purpose of the clinical trial
  • the results expected
  • how the study works
  • any risks or benefits
  • what other treatments are available

Involve your child as much as possible in deciding whether to be in a clinical trial. The clinical trial team can explain information about the trial in a way that children can understand. Ask questions and express any concerns that you and your child have. Take the time you both need to make a decision.

In Canada, a child’s physical, mental and emotional development is considered in determining their ability to make decisions about their treatment and give consent. Different provinces have different rules about children and informed consent. In general, children who are fully or partly capable of understanding their care have the right to make decisions about their treatment.

Children who are not old enough for consent but old enough to be part of decision-making are asked for their assent. Assent is a child’s agreement to participate in a clinical trial.

When your child cannot give consent or isn’t old enough to understand the information about their treatment, as the parent or legal guardian of the child you are responsible for giving parental permission, which is a type of informed consent.

Deciding not to be in a trial

Having your child in a clinical trial is a choice – it is not something that you must do. Your child’s care will not be affected, whether or not they are in a clinical trial.

If your child is old enough to understand the information about a clinical trial and doesn’t want to be part of the research, they shouldn’t be.

If you decide not to take part in a clinical trial, your child will continue to receive the same quality of care from your child’s healthcare team and the hospital. If you do decide to take part in the research, signing a consent form is not a contract. You or your child can change your mind and withdraw at any time.