What happens next?

In 2019, we began the first round of follow-up of all participants who completed the questionnaires. Follow up will proceed on a rolling basis over 2019 to 2021, based on the year in which participants completed the study, so that each participant is followed up approximately 3 years later. Participants will also be invited to provide a faecal (poo) sample and a blood sample at this time, if they haven’t done so previously.

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 are encrypted and can’t be accessed by a third party. We also run security testing to ensure the website itself has no vulnerabilities.

Any saliva, blood or poo samples you provide will be stored indefinitely at the Precision Medicine Biorepository at Monash University. They will be stored securely and only authorised Cancer Council Victoria and Monash University 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 findings from the samples?

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.

Participation in the study should not alter your use of routine health care or health screenings in any way. We send regular newsletters to keep you up to date with study progress.

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 changes should I alert you to?

Please alert us of any change to your contact details, including phone number, residential, postal or email address, so that we can stay in touch and keep our records accurate and complete. You can update these by completing the change of details form, logging into your profile or by contacting us. 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. The questionnaires are designed as a snapshot in time, so you do not need to alert us of changes to your health, lifestyle or your family history of cancer.

What should I do if I am diagnosed with cancer?

Periodically, we receive information from the State and Territory Cancer Registries and the Australian Cancer Database to help us to track the health status of study participants, so you do not need to contact us if you are 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.

Am I eligible to participate in follow - up?

All participants who completed the questionnaire at baseline will be invited to complete the follow-up questionnaire. You are invited to take part even if you have moved overseas or your health has changed, such as being diagnosed with cancer. Some participants will also be invited to provide a faecal (poo) and blood sample. Study participants living overseas or diagnosed with cancer (except non – melanoma skin cancer) will not be asked to provide a sample. If you have previously provided a sample for the study, you will not be asked to do so again. If you have any questions about your eligibility, please contact the ABC Study Team at info@abcstudy.com.au or by calling 1800 688 419.

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 info@abcstudy.com.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 that are 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 to you 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.