Clinical trials and other cancer research
It is usually not clear why some children get cancer, and some don’t, or why some treatments work for some children, and not for others. That’s why ongoing research is so important.
Part of the research into childhood cancer involves how children’s cancer is treated. Because better treatments mean better outcomes.
Research may focus on improving outcomes for childhood cancer, reducing traumatic side effects or both.
Scientists continue to investigate new and better ways to treat children's cancer. This is often done by having clinical trials. There are also other types of cancer research.
Clinical trials are studies that test new ways to detect, treat or manage health conditions, including cancer. The aim of a clinical trial is to find out whether a new way:
- is safe
- is better than the current way of doing things.
Your child can volunteer to take part in a trial. This means you and your child choose to take part. While you won’t get paid, it will not cost you to take part. Expenses, such as travel or medicines, will be covered by the trial.
Why join a clinical trial?
Joining a clinical trial means that you and your child will help scientists better understand your child’s type of cancer. You will also help to develop better treatments for other children with that type of cancer.
New treatments must go through very strict approval processes before they can be used in a clinical trial. If the trial shows that the new treatment is better than the current treatment, the new treatment might become the standard of care for children with that type of cancer.
Being part of a clinical trial may or may not directly benefit your child. If a new test or treatment works well, they will be the first to benefit from it. However, some side effects, or a poor response to the test or treatment, are possible.
Taking part in a clinical trial might involve more tests and hospital visits than the usual care. However, trials are often run in the best-resourced hospitals. A specialist medical team will watch your child closely if they are in a trial.
What clinical trials are there right now?
Talk to your child’s doctor to find out about current trials.
You can also search the following websites for current trials that your child might be able to join:
- ANZCHOG Children’s Cancer Clinical Trials Repository (ACCCTR) lists all clinical trials open to children and adolescents with cancer or blood disorders in progress at Australian children's cancer centres.
- Australian Clinical Trials has information about all types of current clinical trials, not just cancer. It includes a section on clinical trials and children, which explains the informed consent and assent processes for children.
- Cancer Australia's Australian Cancer Trials has information about the latest clinical trials for cancer care. Some of these trials will not be listed as 'paediatric'. Some adult trials may also apply to children.
How can my child join a clinical trial?
If you and your doctors find a suitable trial for your child to join, the researchers will check to make sure your child is eligible. This might involve some extra tests and scans.
If your child is eligible, you will meet with your child’s doctor and the research nurse to discuss the trial.
Before deciding to enrol your child in a clinical trial, there are lots of questions you should ask. You should discuss the trial with your child’s doctor to make sure you understand the process, the potential benefits and potential risks and side-effects. Always ask more questions if there is something you don't understand, there is nothing wrong in asking questions.
Legally, your child is not old enough to make a decision about their treatment, so you will need to decide for them. This involves informed consent. Informed consent is a process where you are given all the information you need to decide whether you want your child to participate. However, children who are old enough or mature enough can also be asked to agree to your decision. This is called giving assent.
Sydney Children’s Hospital have developed a short animated video for children called ‘What are childhood cancer clinical trials?’ to help explain to parents and young people what clinical trials for childhood cancer are. It is also informative about the clinical trials process in general, and may help all families wishing to know more about clinical trials.
Other types of cancer research
Many scientists are trying to work out exactly how and why cancer develops. They then try to use this knowledge to develop better tests, treatment and prevention. Researchers work in:
- medical research institutes
- the children’s cancer centres in each state (see Research organisations and networks).
Cancer Australia’s Priority-driven Collaborative Cancer Research Scheme supports research that reduces the impact of cancer on the community and improves outcomes for people with cancer. The scheme brings government and other organisations together to fund cancer research in Australia.
Cancer Australia's Support for Cancer Clinical Trials program provides funding to Australia's 13 National Cancer Cooperative Trials Group, including the Australian and New Zealand Children's Haematology and Oncology Group (ANZCHOG).