When we say “you”, we mean the young person with cancer. That could be “you” or “your child”.
What does participation involve?
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:
- Patient information – for example, month/year of birth, postcode, sex, language.
- Health information – for example, medical history, pathology results, survival.
- Clinical trial information – for example, clinical trial enrolments, date of enrolment.
Data protection and privacy
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.
Benefits & Risks of participating
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.
To decline participation or to withdraw, please: click here