The Cancer Information Registry for Children and Adolescents in Australia (CIRCAA) is a national registry to record information about the children, adolescents and young adults being cared for in a specialist children’s cancer centre in Australia.
CIRCAA’s key purpose is to clearly understand the number and range of cancer types occurring in young Australians. This information will enable the Australian community of paediatric cancer health professionals to:
CIRCAA is being run by ANZCHOG. ANZCHOG is a collaborative research group with a mission to ensure that high quality clinical trials are available to Australian and New Zealand paediatric cancer patients.
All children, adolescents, and young adults who:
For eligible patients, data will automatically be added to the CIRCAA registry by hospital staff unless the patient or their parent or guardian tell us they don’t want to be involved.
You do not have to actively do anything to be involved in this research. The research staff at your hospital will collect information from your medical record and submit it to the CIRCAA registry.
CIRCAA will record the following types of information:
Your privacy is very important to us. Staff at your hospital will submit your information electronically to the web-based CIRCAA registry. The registry database is hosted by Monash Health in Melbourne, and is managed by the ANZCHOG National Trials Centre, located at the Hudson Institute of Medical Research, in Melbourne. Access to registry data is limited to trained CIRCAA researchers and is password protected.
CIRCAA will not collect any information that directly identifies you, such as your name, full date of birth or address. The researchers at your hospital will assign your information a unique code that will be used to track your data over time. Only the staff at your hospital will be able to link your name to that code.
You will never be individually identified in any public reports.
To advance science, medicine and public health, we may also share your data with any current and future funders, research projects, biobanks or medical journals. Before providing this information, each project will be reviewed and approved by the CIRCAA Steering Committee, made up of paediatric oncology health professionals in Australia and/or an accredited Ethics Committee.
Information collected in CIRCAA will be used to support research into the health and wellbeing of children and adolescents with cancer.
This data may improve the range of clinical trials available to young Australians in the future. Clinical trials provide a pathway to test new treatments and to improve clinical practices using evidence.
Despite our efforts to protect your privacy, there is a risk that your health information could be accidently released or inappropriately accessed, and you could be identified.
If you or your child has been diagnosed with a new or relapsed tumour at one of the following hospitals after January 1st, 2025, then you will be included in CIRCAA unless you tell us you’d like to opt out.
Hospitals participating in CIRCAA
The easiest way to opt out is to tell someone from your treating centre, this could be one of your doctors or nurses, or one of the research team.
If you do not want to tell someone from your treating centre directly, you can email the central CIRCAA team at ANZCHOG at circaa@anzchog.org to let them know. If you decide to opt out by telling the ANZCHOG team, you will need to let us know your/your child’s full name and which centre they are being treated at. We will then let the treating centre know you do not want them to send any information about you/your child to CIRCAA.
