Improving the health and wellbeing of all Australians

Information for participants

Thank you for participating in the 45 and Up Study – your participation is making a real difference to the lives of all Australians.

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Frequently Asked Questions

If contacting us by email please include your telephone number. If contacting us by mail, please include your name, address and date of birth.

Yes, you can. Please update your details using the Change of Details form so that we can stay in touch.

We may have incorrect address information in our database, or you may have previously requested that we exclude you from personal contact or asked to withdraw from the 45 and Up Study.

Please get in touch and we can confirm your participation status.

If you have requested contact by email, please check if our messages are in your “junk” folder or your email address has changed. If it has, please update your contact details with us.

Thank you for your interest in participating. We are not currently accepting new enrolments for the 45 and Up Study, although we may do so in the future.

At any time, you can request no further contact or you can completely withdraw your data from any future research.

You can request no further contact  if you do not want to be contacted again but are happy for us to use the information you have already provided to be used for research, including continuing to have your information linked to routine health and other records.

To request no further contact you can do any of the following:

If you no longer wish to participate in the 45 and Up Study AND you no longer wish for your previously submitted information to be included in the Study’s de-identified research databases, you can withdraw at any time. You will no longer be contacted and your health will no longer be followed. Your decision regarding participation will not affect your healthcare or disadvantage you in any way.

To request withdrawal, you can do any of the following:

This request will apply from the time you notify us because it is not possible to withdraw information already used for research or publication.

 A sub-study is a research project where researchers using the 45 and Up Study choose to look more closely at a specific area and enhance the information already collected by gathering more data from participants.

If you are invited to take part in a sub-study you might be asked to fill in a questionnaire, be interviewed by a researcher, provide a small blood sample or complete some activities. Participation in sub-studies is voluntary. You can decline to join a sub-study and still remain a participant in the 45 and Up Study.

Sub-studies involving 45 and Up Study participants have covered subjects as diverse as falls, patients’ hospital experiences, non-melanoma skin cancer, diabetes and retirement.

If you have a question about participating in a sub-study, please refer to the relevant participant information documents linked below, or contact us. Information for past sub-studies is also available by contacting the Study team. For a list of research projects underway using the 45 and Up Study data (including these sub-studies), please visit the research projects page. Research outcomes from these projects can be found on the publications page.

Download the brochures below to find out more about the different sub-studies

Information held is not released in any way that identifies an individual or household. Personally identifying information that the Study receives will only be released with your consent or as required by law. All information we collect is stored, analysed and reported on with all individual identifying details removed. This ensures we maintain total security, confidentiality and anonymity of the Study participants.

The Sax Institute, as the manager of the 45 and Up Study, adheres to Commonwealth and state privacy legislation: Privacy Act 1988 (Cth); Health Records and Information Privacy Act 2002 (NSW); and the NSW Health Privacy Manual for Health Information.

All information collected and held for the Study is kept strictly confidential and is only used for health services research, planning and to improve treatment.

The 45 and Up Study is also overseen by the University of NSW Human Research Ethics Committee to ensure all requirements for ethical conduct and information security, confidentiality and privacy are met.

To access any 45 and Up Study information, all research proposals undergo a rigorous approval process. The research must be credible and of value and researchers must also seek approval from an independent ethics committee for their proposal.
Once these requirements are met, the researcher can access Study information for the duration of their project through our secure data analysis facility.

Anyone working on the Study, including researchers accessing the data, sign a confidentiality agreement and follow strict policies and procedures to ensure the data and information are protected.

Further information on the health and other records that may be used in the 45 and Up Study is available here.

Contact us

Get in touch with the 45 and Up Study team at 45andUp@saxinstitute.org.au or call us on
1300 45 11 45 (Monday – Friday, 9am to 5pm AEST).

The beauty of the 45 and Up Study is it follows participants over their life course, which allows us as researchers to track changes to people’s behaviour.

Dr Luna Xu, Scientia lecturer, Australia National Heart Foundation Post-doctoral Fellow, School of Population Health UNSW.
The 45 and Up Study is owned and managed by the Sax Institute, in close collaboration with its major partner Cancer Council NSW along with other partners the Heart Foundation and the NSW Ministry of Health.