For families

  • As well as delivering excellent health care, the Royal Children's Hospital Campus is committed to looking for new ways of preventing, diagnosing and treating childhood diseases to improve the health and wellbeing of children.

    You can help by taking part in the many studies conducted across the Campus.

    Please see the Taking Part in Research brochure for more information on participating in research at the RCH.

    What is clinical research?

    What does a research study involve?

    What is involved in a research study can vary depending on what the researchers are investigating.

    It may be as simple as allowing researchers to look at your child's medical records or use leftover tissue or blood that is collected from your child as part of their routine medical care.

    Involvement in other studies may include:

    • Interviews, questionnaires and surveys
    • Blood or urine tests
    • Imaging studies such as x-rays or MRI scans
    • Interventional trials called clinical trials; these types of studies are explained in more detail below

    What is a clinical trial?

    Clinical trials are sets of tests in medical research and drug development that generate safety and effectiveness data for health interventions. Clinical trials are conducted only after satisfactory information has been gathered on the quality of the non-clinical (laboratory) safety of the intervention, and an ethics committee has approved the trial.

    Why do we conduct clinical trials?

    Clinical Trials are used to find innovative ways to prevent, detect, treat or manage various diseases or medical conditions. Clinical trials can involve research into the following:

    • new medicines,
    • surgical and other medical treatments and procedures
    • medical devices
    • vaccines
    • educational interventions
    • diets
    • psychological or behavioural counseling

    Trials offer the hope of developing better interventions or tests for a particular disease or condition, so that even if a trial does not provide a benefit for an individual, it may provide benefits for others with the disease in the future.

    Why should my child take part in a clinical trial?

    Why be part of a clinical trial

    By taking part in a clinical trial, your child can contribute to the advancement of medical knowledge and, in some cases, to improved health for themselves or other children with the same disease or condition.

    Potential benefits and potential risks

    Potential benefits can include:

    • Gaining access to new treatments that are not yet available to the public
    • Obtaining expert care from world leading researchers

    Potential risks can include:

    • The new treatment, intervention or test  may not work for your child
    • There may be unpleasant or serious side effects associated with the new treatment, intervention or test  
    • The need for additional treatment, tests, hospital visits and  time

    Clinical trials and children

    Until recently, children were rarely included in clinical trials and much is still unknown about how children respond to some medications, medical devices and tests. Therefore, clinical trials that are designed to test the effectiveness of treatments, interventions and tests for children are important to ensure that children, too, can receive appropriate, safe and effective treatment and care.

    How to be part of a clinical trial

    How to be part of a clinical trial

    Speak to you child's treating doctor regarding any potential clinical trials that may be suitable for your child. Also visit the Murdoch Childrens Research Institute Research Theme website for details of current research projects and contact details.

    How to find a clinical trial

    To find clinical trials around Australia, click on this link

    Informed consent

    For most* research involving children under the age of 18, a parent or guardian has to give legal consent for the child to be part of the research.

    Informed consent means that the parent/guardian is given information about the key facts of the clinical trial before deciding whether or not their child will take part. Where possible your child should be included in the discussion and decision making process.

    Your child cannot be entered into a trial if you don't want them to be. You are free to say yes or no at any time. There should be no pressure placed on you to enter your child in a trial.

    *any child who has been deemed a mature minor may be able to give their own consent. The research team will make this decision based on ethically approved criteria.

    Questions to ask

    For a list of potential questions to ask the research team, there are a number of suggestions on the Australian Clinical Trials website.

    The Consumers Health Forum (CHF) have developed a factsheet about clinical trials - Consumer guide to clinical trials (PDF, 130KB) - that will also provide useful information.

    Leaving a trial

    You can stop your child's participation in a trial at any time. You can choose to remove your child from the trial at any time without giving a reason and without it affecting the care that your child receives.

    If you do withdraw your child from a clinical trial, the relationship between you and your child's doctor will not be affected.  It is important to discuss your decision with the research team so that they can advise you about any special requirements about leaving the trial and what will happen to information about your child that has been collected to date.

    Further information

    If you would like further information about clinical trials in general please visit the Australian Clinical Trials Website.

    If you would like further information about clinical trials at the RCH Campus please speak to your child's treating doctor.

    Complaints

    If you have any concerns and/or complaints about the research project your child is participating in, the way it is being conducted or your child's rights as a research participant, and would like to speak to someone independent of the project, please contact the Director, Research Ethics & Governance, The Royal Children's Hospital Melbourne on