What happens next?

The ABC Study is a long-term study and aims to follow-up participants with a questionnaire approximately every 3 years to capture changes in their health and lifestyle over time. Participants may also be invited to participate in additional components such as providing samples or participating in substudies. The first follow-up of participants was conducted in 2019-2021. Participants were invited on a rolling basis to complete a new questionnaire as well as provide a poo sample and blood sample. The second round of follow up will run from 2022-2024. Participants will once again have the opportunity to complete a new questionnaire and provide a poo sample and blood sample, if they hadn’t done so previously.

Is it too late for me to complete the questionnaire or return my sample?

It is recommended you complete the questionnaire as soon as possible as previously accessible questionnaires will close in preparation for the next round of questionnaires. This will be based on the year participants completed the baseline questionnaire. If you have missed a round of follow up questionnaires you are still eligible to participate in the next round. Please provide your poo sample and blood sample as soon as possible.

Some of the questions in the questionnaire seem repetitive. Is there a reason for this?

As much as possible we attempt to minimise repetition in the questions as we recognize that your time is valuable.  In some instances questions are repetitive because we are using validated questionnaires that contain a specific set of questions.  We need to include all the questions in order to be able to compare responses in our study to those in other studies.

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 your health has changed, such as being diagnosed with cancer. If you missed participating in one round of follow-up you are still eligible to participate in the next round. Participants currently residing in the EU or UK are not currently eligible to participate in follow up, however participants currently overseas in countries other than these are still eligible to complete the questionnaire. 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.

What can l do if l have a complaint about the study?

If you have any complaints or concerns about the manner in which this research is being conducted or how your personal information is being handled, please contact Cancer Council Victoria's Human Research Ethics Committee, tel:  (03) 9514 6200, email  RGU@cancervic.org.au  or contact the Office of Australian Information Commissioner at  enquiries@oaic.gov.au or tel: on 1300 363 992.