What happens next?

In March 2019, we began to contact participants who joined the study in 2014 and 2015 to update some of the questionnaire data and ask a few new questions. From mid- 2019 we will begin collecting samples of the gut microbiome (the collection of microorganisms living inside you). The ABC Accelerometer Sub-Study has been collecting data since 2016 and aims to include 4,000 participants by the end of 2019.

How is my personal information kept secure?

The security of your information is a high priority. We undertake a number of measures to ensure this.

The ABC Study website runs in secure mode. Data travelling between your computer and the website is encrypted and can’t be captured by a third party. We also run security testing to ensure the website itself has no vulnerabilities.

Any saliva or blood samples you provide will be stored indefinitely at the Genetic Epidemiology Laboratory at Monash University. They will be stored securely and only Cancer Council Victoria and Monash University authorised staff will have access to them. Your biological samples will be labelled with a unique code and only designated staff will be able to link that code to you.

Will you inform me of any saliva and blood analysis results?

We need to collect and test samples from many people before we can draw meaningful conclusions. The research using the information you provide could take some years to complete.

We will not be providing you with personal results, unless they have important implications for your health or the health of your relatives. If our research uncovers any such information, we will seek approval from Cancer Council Victoria's Human Research Ethics Committee to contact you, or the members of your family affected by the information, and offer access to the information. You, or your family members, may decline to receive the information. Please note, the analyses may not be conducted for several years.

Can I opt out of this research study at any time?

If you would like to withdraw at any time, please contact us by email at abcstudy@cancervic.org.au or phone 1800 688 419. If you choose to withdraw, we will continue to use your information and samples in the research unless you instruct us otherwise. Please let the study team know if you do not want us to continue using your information or samples. If you no longer want your information or samples to be used, they will be de-identified and/or destroyed securely.

What should I do if I change address or my information changes?

Please alert us of any change to residential, postal or email address, so that we can stay in touch and keep our records accurate and complete. Simply send us an email to info@abcstudy.com.au, including your date of birth so we can be sure we are updating the right record. Or call us on 1 800 688 419. If you have been invited to the follow up study, you can update your contact details upon logging in.

What should I do if I am diagnosed with cancer?

You can also alert us, if you wish, by sending an email at info@abcstudy.com.au or give us a call on 1 800 688 419. If you have been invited to participate in the follow study, you are still eligible to do so. You can report the diagnosis within the questionnaire. If you have been invited to the Accelerometer Sub-Study, please alert the team if you have been diagnosed with cancer.

Who is selected to take part in sub-studies?

Participant selection will vary according to the research question. Currently, participants who have been provided a blood sample are eligible to be selected for the Accelerometer Sub-Study.

Can I access the data I provided to you?

In accordance with applicable Australian and Victorian health privacy legislation, you have the right to access certain information about you that is collected and held by us. This includes interpretable genetic information that is health or sensitive information about you. You also have the right to ask for certain information to be corrected. Contact the study team on 1800 688 419 or email abcstudy@cancervic.org.au if you would like to access your information. If you do so, once we verify your identity, you will receive a copy of all submitted questionnaires and responses, as well as any interpretable and applicable findings that have clinical significance to you available at the time of request.

What help or support do you have for those diagnosed with cancer?

Cancer Council can be contacted on 13 11 20 for information and support. Lines are open Monday to Friday, 9am to 5pm and staffed by experienced cancer nurses with oncology qualifications.

Although they can't give individual medical advice, they can talk about the effects of specific types of cancer and explain what will happen during processes like chemotherapy, radiotherapy or other cancer treatments.

Cancer Council Victoria's website also has resources and information available, with some in other languages.