Recruitment and data collection

Recruitment to the ABC Study began in October 2014 and closed in late 2018, with more than 80,000 Australian adults registering their interest online and 56,282 participants completing the questionnaires.

The ABC Study is a long-term study and aims to follow-up participants every 3 years. Each wave of follow-up will involve a new questionnaire to capture changes in participant’s health and lifestyle over time as well as asking some new information not captured in previous questionnaires. Participants may also be invited provide additional biological samples or participate in sub-studies.

Participation in all study components is voluntary. Participants will have the option at each stage to choose to participate in some or all of the components of a particular wave of follow-up.

Questionnaires

At Baseline, participants completed three online questionnaires, Family History, Health & Lifestyle, and Diet. The Family History questionnaire asked about cancers that had been diagnosed in their close relatives. The Health & Lifestyle questionnaire asked about early life including childhood living arrangements and pet ownership, body size, smoking, health conditions, use of medications and daily activities. Women completed additional questions regarding pregnancies and menopause, if applicable. The Diet questionnaire asked about eating habits and alcohol consumption.

Participants were invited to participate in the first wave of follow-up (follow-up 1) between 2019 and 2021. It included two questionnaires. The first asked about general health, body size, smoking, medical conditions, sun exposure and daily physical activities. The second asked about consumption of different types of beverages including alcoholic and non-alcoholic drinks. A subset of participants who completed a faecal sample were also asked about their eating habits, and answered a questionnaire after completing their sample.

Participants were invited to participate in the second wave of follow-up (follow-up 2) between 2022 and 2024.  The questionnaire included questions about general health, body size, smoking, vaping, alcohol consumption, physical activity, health conditions, medication use, cancer screening, sleep, the environment, and COVID-19. A subset of participants who completed a faecal sample were also asked about their eating habits, and answered a questionnaire after completing their sample.

The third wave of follow-up (follow-up 3) commenced in 2025 and continue until the end of 2027. The questionnaire includes questions about general health, body size, smoking, alcohol consumption, physical activity, cancer screening, reproductive health (for females only).

Saliva sample

Over 51,500 participants provided a saliva sample between 2014 and 2018. They were sent a special saliva sample collection kit, which they completed and returned by post.

The saliva sample will be used as a source of DNA to study the link between genetics and the development of cancer and other diseases.

Blood sample

Some participants were invited to provide a blood sample at baseline by attending a local pathology centre. Over 10,000 participants gave a blood sample between June 2015 and August 2018.

Following the collection of blood samples from a subset of ABC study participants at baseline, additional participants were invited to provide a blood sample from 2020 until 2024. Blood samples were provided at a local pathology clinic at no cost to participants.  

Blood samples will allow the researchers to examine a wide range of measures (hormones, vitamins, fatty acids, and other biological markers) in addition to DNA. This will allow them to investigate the biological mechanisms underlying the development of cancer and other diseases.

Accelerometer Pilot Study

Approximately 4,000 participants participated in this pilot study between 2016 and 2020. Participants were asked to wear two small monitoring devices (an accelerometer and inclinometer) to measure their movement patterns over a period of seven consecutive days.  

The information collected from these devices will provide a clearer picture of how much time individuals spend in different types of reclining, sitting and moving activities. The purpose of this pilot was to ascertain the feasibility and acceptability of participants to wear accelerometers. The information collected from these devices will help researchers understand how different patterns of sitting or moving are associated with the development of cancer and other diseases.  

Faecal (poo) sample

From 2019-2024 participants were invited to provide a poo sample. A sampling kit was sent out in the post for participants to complete at home and return via post. Instructions were included with the kit and can be accessed here .

Poo samples allow researchers to study gut microbiome – the community of microorganisms (e.g. bacteria, viruses, fungi and parasites), and their metabolic products, that inhabit the human body - and its potential role in the development of  cancer and other disease outcomes.

Note: This sample collection is unrelated to the National Bowel Cancer Screening program; samples will not be screened for cancer. Participants were still invited to provide a sample for the study even if they had recently completed the National Bowel Cancer Screening kit. Participation in this component should not alter participation in routine screening.

Accelerometer Study

Following the Accelerometer Pilot Study, further funding was provided to the ABC Study to expand the collection of accelerometer data to the entire cohort. Accelerometer data will be collected for participants who complete the online questionnaire as part of follow-up 3 (2025-2027). The aim of the data collection is to capture sleep, sedentary and activity behaviour of participants using a 24-hour accelerometer. This information will provide new insights into the interactions between sleep, sedentary behaviour, physical activity, and the development of cancer, and has the potential to inform more targeted cancer prevention strategies.

Instructions will be provided with the device. Frequently asked questions about the study can be accessed here.

Sleep Pilot Study

Sleep health was assessed on a subset of 167 ABC Study participants in 2022/2023 using innovative monitoring technology, the Withings under-mattress sensor, which accurately tracks sleep data including sleep duration, efficiency, cycle (deep and light sleep), sleep apnoea and position, snoring, heart rate, respiratory rate and temperature. The aim of this pilot study was the feasibility of using the Withings device to study sleep health. 

Linkages

Record Linkage

Periodically, information may be collected by Cancer Council Victoria about participants from their records held by various service providers. We also collect information about participants from other organisations to update and verify our records without needing to contact participants too often. At the time you registered for the study you consented to us obtaining information from:

• Australian State and Territory Cancer Registries
• The Australian Cancer Database
• The National Death Index
• Other health databases, both public and private

To date we have linked with the National Death Index, the Australian Cancer Database and Australian State and Territory Cancer Registry.

Medicare and Pharmaceutical Benefits Scheme information 

Participants are being invited to consent to the release to the ABC Study of some of their data from the Medicare and Pharmaceutical Benefits Scheme claim information to the Australian Breakthrough Cancer Study. This will enable research into how health service usage and taking some medications are related to the risk of cancer and other disease.