Questionnaires and Participation - Australian Breakthrough Cancer Study

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 study components such as providing samples or participating in sub studies.

The first round of follow-up of participants was conducted in 2019-2021, while the second round of follow-up was conducted between 2022 and 2024. Each round of follow-up has a different questionnaire and participants are invited on a 3-year rolling basis, generally based upon when they completed their first questionnaire during Baseline (2014-2018). Participants have had the opportunity to contribute other study components including providing a poo blood sample.

The third round of follow up is currently in progress and will run from 2025-2027. Participants will be invited to complete another online questionnaire which is much shorter than previous questionnaires. Participants who complete the questionnaire will also have the opportunity to provide physical activity data by wearing a wrist-worn accelerometer for 7-days.

Am I eligible to participate in follow - up?

All participants who completed the questionnaire at baseline (2014-2018) will be invited to complete follow-up questionnaires. You are invited to take part even if your health has changed. 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 residing in other overseas countries are still eligible to complete the questionnaire.

In our third round of follow-up, participants who complete the questionnaire will be invited to participate in the Accelerometer Study, which involves wearing a physical activity monitoring device. Participants who are living overseas will not be asked to participate in this component. 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.

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. Simply send us an email at info@abcstudy.com.au, with your updated contact details including your date of birth so we can be sure we are updating the right record, or you can log into your profile on the website, or you can also call us on 1800 688 419. If we notice your contact details are no longer current, we may use publicly available data to try to regain contact with you.

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. You may have the opportunity to update this information in future follow-up studies as some questions asked previously will be asked again to capture changes.

Is it too late for me to complete the questionnaire?

It is recommended you complete the questionnaire as soon as possible after agreeing to participate in the latest round of follow-up. Questionnaires from previous rounds of follow up will close in preparation for the next round of follow-up. Participants are invited to participate in follow up rounds 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.

If you are unsure, login to the website and look at the “Follow Up 3 Questionnaires” here you will be able to see any outstanding components. If you still have questions, send an email to info@abcstudy.com.au or you can call us on 1800 688 419.

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

Yes, you can opt out of the ABC Study at any time. If you would like to opt out of the current round of follow-up, please let us know via the following link: Opt out. You can also contact us by email at info@abcstudy.com.au or phone on 1800 688 419.

If you would like to withdraw from the study, please visit the following link: withdraw, read the information on the different types of withdrawal and choose your preferred option. You can also contact us by email at info@abcstudy.com.au or phone on 1800 688 419.

Can I defer my participation?

If you would like to temporarily pause your participation in the ABC Study for any reason, such as illness or travel, please contact us at info@abcstudy.com.au or call us on 1800 688 419 to discuss your options.

May I continue to participate in the study after a cancer diagnosis?

Yes, once you tell us about your cancer diagnosis, we will continue to use your information and ask you to complete follow-up surveys. This will allow us to learn if lifestyle, environment, or genetic factors influence treatment outcomes, survival, and quality of life following your diagnosis. It is important for us to follow you for the full length of the study.