FAQs

Is it too late to complete the questionnaires or saliva sample?

The ABC Study is no longer collecting questionnaire data. If you have been sent a saliva kit, you can still complete and return it for use in our research.

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 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 on the website to ensure the website itself has no vulnerabilities.

Any saliva, blood or samples collected from you 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.

Where do I send my saliva sample?

The Reply Paid address for returning the saliva sample is:

Cancer Epidemiology Centre
Reply Paid 89916
MELBOURNE VIC 3004

You should have received a reply paid envelope that included the address. Apologies if this was not the case. Contact us if you have any questions or concerns.

I do not want to provide saliva or blood biospecimens, are you still interested in me taking part in this study?

As an important part of the study is looking at the influence of genes, we do request either a saliva sample or blood sample. If you are participating and prefer to opt out of this component, please let us know.

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 family. 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 anytime, 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/or saliva, blood and tissue 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 postal or email address, so that we may stay in touch and to 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 correcting the right record. Or call us on 1 800 688 419.

What should I do if I am diagnosed with cancer at a later stage?

Those who have consented to take part in the study have agreed to allow us to periodically contact relavant organisations, such as the Cancer Registries, on their behalf. 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.

What happens next?

The study closed for new registrations on 30 June 2018 and we stopped collecting questionnaire data 30 November 2018. If you have been sent a saliva kit, you can still complete and return it for use in our research. There is one sub-study that has already begun (ABC Accelerometer Sub-Study) and we are planning another regarding the gut microbiome (the collection of microorganisms living inside you). From March 2019, we will begin to contact some participants to update some of the questionnaire data and ask a few new questions.

How is this research study being funded?

The ABC Study is funded by donations to Cancer Council Victoria. We also have support from the Ian Potter Foundation and The Harry Secomb Foundation and the Percy Baxter Charitable Trust, managed by Perpetual.

Who is selected to take part in sub-studies?

Participant selection will vary according to the research question. Participants who have been selected to provide a blood sample are eligible to be selected for the Accelerometer Sub-Study. Once participants have provided a blood sample, a random sample are then invited to participate in the ACM sub-study or microbiome study.

Can I access the data I provided to you?

In accordance with applicable Australian and/or Victorian health privacy legislation, you have the right to access certain information about you that is collected and held by us. This will include 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 clinical findings available at the time of request.

I have a friend/relative with cancer, what help/support do you have available for them?

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.