Frequently Asked Questions

Thanks to your involvement, we have published over 780 pieces of research in peer reviewed journals. You can search our research using a keyword search, depending on your area of interest, here. You can also visit our Data Driven Discoveries page here which features a selection of past and recent findings that have been published using your data. This page is regularly updated.

We take the security of all data relating to our participants very seriously. The Raine Study’s data are stored in encrypted databases and on secure servers. The Raine Study’s biosamples are stored across several different secure locations. They are stored without identifying information on them in secure locations accessible only to qualified personnel. All these storage locations comply with the requirements of the Human Research Ethics Committee of the University of Western Australia, which in turn is in full compliance with the guidelines outlined in the National Health and Medical Research Council Act 1992. Researchers must undergo a rigorous approval process before being granted access to de-identified data.

• You will not be identified from the research – researchers do not see your name with your information.
• Every research project is checked to make sure it meets the highest scientific and ethical standards.
• In the same way as a doctor who treats you is bound to keep your information confidential, the Raine Study team, and all the researchers we work with, are bound to keep your information confidential.

You can read more about how we protect your privacy here.

Access to the data and biosamples is limited to security checked, trained and authorized personnel only.

Strict ethical and legal guidelines and policies for research are in place to prevent any unauthorized disclosure of participants’ contact details.

Participants’ contact details are not accessible to third-party organisations or individuals. For example, when conducting follow-up studies, Raine Study staff members contact participants directly and do not share contact details with any external parties.

As a longitudinal health study, we track the same participant families throughout their life, so no, we don’t recruit any new families as the years go by. We may recruit new participants from our existing families, such as children born to our participants and biological relationships, but not new families.  You guys are it, which is why you are so special to us!

Yes, of course. We are happy to provide access to information collected about you upon written request. Simply send the written request to rainestudy@uwa.edu.au and we will be able to help.

You can update your contact details such as address, email, phone number as well as the birth of any children etc on this page, or call (08) 6488 6952.

You can add any details of children, spouses etc on this page, or call (08) 6488 6952.

We began booking appointments for the current Generations follow-up in April 2023, and appointments will continue through to the end of 2026. If you haven’t attended yet, we’d love to hear from you – we don’t want you to miss out. If you’re currently overseas or interstate and planning to be back in Perth this year, please get in touch, and we’ll do our best to arrange an appointment while you’re here.

This follow-up marks the first time we’ve been able to include both our Gen1 and Gen2 participants simultaneously. We haven’t been able to do this since the study began, when pregnant others were recruited between 1989 and 1991 and their health was assessed alongside ultrasounds of their babies. Being able to follow multiple generations at the same time is a key feature that helps set our study apart from other cohort studies.

We also started conducting a Generation 3 follow-up in 2024, alongside the inclusion of Gen2b participants (the other biological parents of our Generation 3 cohort). This means we are now able to collect information not only from Gen3 participants themselves, but also from both of their biological parents.

If you have children, and would like them to be involved, click here for more information.

Thanks to your involvement we know life-changing things like:

• Ultrasounds on pregnant mothers are safe, and we have set international standards for ultrasounds during pregnancy
• Mothers who don’t smoke during pregnancy increase the outcomes of having happier and healthier children
• Children who grow up without a liquor outlet close to their home drink less as a young adult
• Young adults who participated in sport more as children have stronger bones
• Children who were breast-fed for four months or longer have healthier weight and less asthma and allergies
• Breast-feeding reduces the chances of a middle ear infection as a young child
• Children with better sleep patterns have better mental health in later life
• Teenagers who eat a healthy diet have better school achievement
• Even if you have back pain as an adolescent, it doesn’t mean you will experience it throughout life
• Children and adolescents who watch less TV have less fat as a young adult
• Vitamin D is good for eye health
• Working less than 38 hours a week decreases your risk of heart disease

Plus so much more. You can search more of our research here.

Participant Involvement is at the heart of everything we do, and we actively encourage participants to be involved from the early stages of our research projects. There are several ways you can influence the research we conduct. This includes community consultation, where groups of cohort participants review research proposals in a forum setting and provide direct feedback to researchers. Participants may also take part as research buddies, working closely with researchers through regular meetings during the planning and design phases of a study. Another key avenue for involvement is through joining the Raine Study Community Advisory Committee (RSCAC), an executive group of cohort representatives that provide advice on the operational activities of the Raine Study.

A recent example of participant led influence is our Priority Setting Workshop, one of the largest and most comprehensive engagement activities we’ve undertaken. This workshop directly involved cohort participants in setting future research priorities, helping establish a benchmark for participant involvement in cohort studies. Participants collectively shaped the future direction of the Raine Study by identifying research areas they wanted priorities, including mental health, reproductive health, and generational impact, among others. This collaborative approach ensures our research is informed by participant perspectives, making it more relevant and meaningful, and shows just how strongly participants can influence the types of studies we undertake. To read more about this project, click here.

If you would like to get involved in future projects, email your expression of interest to rainestudy@uwa.edu.au

Yes! While our follow-up physical assessments are conducted in Western Australia, you can still stay involved by completing a few online questionnaires. If you’re planning a visit to Perth at any stage, please let us know, and we’ll do our best to arrange an appointment while you’re here/

It depends on the follow-up, but yes – there are usually always some parts of each follow-up you can be involved in. Just let us know if you are pregnant or suspect you are pregnant when booking.

The Raine Study looks at all areas of health and well-being, not just physical health. So therefore the environmental factors associated with where you live, work and socio-economic details are really interesting areas of study. All of these details are of course kept confidential and always de-identified.