We want to learn what patients and families need to know about clinical trials for childhood cancer. This will help us build an easy-to-use Education Hub with trusted information all in one place.
Your answers will tell us
- What information is most important to you
- How you like to get information
- What makes it hard to get the information you need
Your answers will help us find information gaps, and provide information for us to create new resources, which may help support families make informed choices about taking part in clinical trials.
A clinical trial is a type of research study that helps doctors learn more about how to treat diseases like cancer. In a clinical trial, doctors test new treatments to see if they are safe and if they work better than current treatments.
Who can take part in this survey?
‐ Young people who have or had cancer as a child or young adult (age 0–25 when first diagnosed)
‐ Their parents, guardians, carers, kinship carers or elder, community member, family members, friends and advocates
If you are under 18 years of age:
‐ A parent, guardian or decision-maker must give permission for you to take part
‐ Please read this information together before starting
If you are a parent, guardian or decision-maker providing consent for someone under 18:
‐ Please read through the survey with your child
‐ You can fill in the survey on their behalf if they are too young to answer
If you have difficulty reading English or it is not your preferred language
‐ You can ask a translator to help explain the questions and complete the survey on your behalf
What will taking part involve?
This survey will take about 20 minutes. There are multiple choice questions and open response questions about your information needs around clinical trials.
All your answers are anonymous. We will only ask for your name, email, or phone number at the end only if you want to join a follow-up focus group discussion. This is completely optional.
Your answers will not be shared with your healthcare team or affect your/ your child’s treatment now or in the future.
Are there any benefits in taking part?
You may not get direct benefits from doing the survey. But your answers may help us:
- Learn what families need to know about clinical trials
- Create new educational resources and make existing resources easier to find
- Build a ‘hub’ of clinical trial information that is easy to use and accessible across Australia and New Zealand
This could make it easier for other children, families and communities to find information and make informed choices.
Are there any risks in taking part?
Some questions ask about your experience with clinical trials. Thinking about these times might be upsetting for some people. The questions are not about treatment or outcomes, so we believe the risk of distress is low.
How will the data from the survey be used?
Will my answers be kept private?
All data that is collected from this survey will be de-identified, meaning no names or identifying information will be recorded in the research data. We do not use names or any identifying information when we write out what people say in focus groups.
Research data from the results of this study may be published and shared in education meetings. However, we will not use identifying data.
We may also use data from this study in future research but only with ethical approval. Again, no identifying information will be used.
