Data collection at recruitment

Informed Consent

Prior to registering for the study, participants had the opportunity to read the Participant Information and Consent, to decide if they wanted to sign up and take part.  

Baseline questionnaires

Participants completed three online questionnaires:

1. The first was titled “Family History” and asked participants questions about cancers that had been diagnosed in their close relatives.

2. The second was titled “Health and Lifestyle” and asked participants questions about early life including childhood living arrangements and pet ownership, body size, smoking, health conditions, use of medications and physical activities. Women completed additional questions regarding pregnancies and menopause, if applicable.

3. The third was titled “Diet” and asked participants questions about their eating habits and alcohol consumption.

Saliva Sample

All participants provided a saliva sample once they had completed the baseline questionnaires. This sample will be used as a source of DNA to study genetics.

Blood Sample

A subset of participants also provided a blood sample. This sample will allow us to biomarkers, such as hormone levels and markers of inflammation.

Data storage and usage

All electronic records containing personal information held by the Cancer Epidemiology and Intelligence Division (CEID), CCV are accessed via password protected computers at CCV.  Personally identifiable information is accessible only by specified project staff. Data are stored in compliance with the Commonwealth Privacy Act. Further details about Cancer Council’s Privacy Policy are available on the website

Personally identifiable information is available to project staff when contacting participants and for record-linkage to occur. All CCV staff are required to sign confidentiality agreements. A statement outlining this is included in Section 7 of the Participant Information Sheet.

Electronic data relating to this project are stored on a “local” hosted server and on a hosted server environment on MS Azure Cloud.  CCV has an agreement with the hosting company which conforms to, and is compliant with, CCV's privacy policy. There are strict controls for who can access this data.

Only staff that require access to identified information to undertake their work have access to the contact management system which stores identified information.  Data managers, statisticians and researchers have access to re-identifiable data for data cleaning and analysis purposes.

De-identified data will also be provided to other researchers in the future, for use in studies that have been approved by Cancer Council Victoria’s Human Research Ethics Committee.

Storage and use of samples

Any saliva, blood or other biological samples collected from participants will be stored indefinitely at the Genetic Epidemiology Laboratory (GEL) at Monash University. At GEL they are stored securely and only authorised GEL staff have access to them. Samples are labelled with a unique code and only authorised staff have the key to link that code to the participant.

De-identified samples will also be provided to other researchers in the future, for use in studies that have been approved by Cancer Council Victoria’s Human Research Ethics Committee.

Note: Samples collected from 2014 through September 2018 were stored at the University of Melbourne’s Genetic Epidemiology Laboratory. In September 2018 GEL moved from the auspice of the University of Melbourne to Monash University.  All samples initially stored at the University of Melbourne were moved to Monash University. All samples will be stored indefinitely at GEL, Monash University. They will be stored securely and only Cancer Council Victoria and Monash University authorised staff will have access to them.


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Cancer Epidemiology Division
Cancer Council Victoria
615 St Kilda Road
Melbourne 3004, Australia