As a participant in the 45 and Up Study, you are one of more than a quarter of a million “national treasures” helping us to better understand healthy ageing.

This page is where you’ll find resources such as information on how to change your details and answers to frequently asked questions.

Study progress: 2017 and beyond

In September 2012 we began contacting Study participants with an invitation to complete a five-year follow-up questionnaire. Data collection for this phase of follow-up is now complete. The questionnaire was available for online completion as well as via a printed booklet, and this will continue into the future.

The first five year follow-up was a major milestone for the Study and we thank our participants for their contribution to its success.

In February 2017 we tested questions for the next round of follow-up, which will be undertaken from 2017 to 2020. Again we will be recontacting all participants to see what has changed.

Studying large numbers of people over time can provide information critical to the nation’s health. The follow-up will help us build a more complete picture of how the health of the population is changing as we age.

Your toolkit

To update your contact or personal details, you can do any of the following:

Even if you no longer live in NSW, or don’t have a current postal address, you remain eligible to participate in the 45 and Up Study. Please let us know so we can update our records.

You can also use the Change of Details form to opt to complete questionnaires online (where available) or to receive your participant newsletter, Catch Up, by email or post.

Anyone who is already part of the 45 and Up Study is eligible to receive a follow-up questionnaire. Follow -up questionnaires will be sent to individual participants every four to five years. To confirm your participation, you can do any of the following:

  • Email us
  • Call us on 1300 45 11 45
  • Write to The 45 and Up Study, GPO Box 5289, Sydney NSW 2001

The first follow-up wave was undertaken from 2012 to 2016. The second follow-up wave will be undertaken from 2017 to 2020, and we expect to contact about 60,000 participants each year.

Completing the follow-up questionnaire

The follow-up questionnaire can be completed online or by hard copy booklet. If you receive an email invitation to complete the questionnaire online but would prefer to complete a printed copy, or you receive a printed copy and would prefer to complete it online, please contact us to organise this.

You can also use the Change of Details form to select completing questionnaires online (where available) or to receive the 45 and Up Study participant newsletter, Catch Up, by email or post.

Returning the follow-up questionnaire

Please return your questionnaire in the reply paid envelope provided or post (no stamp required) to:

Confidential
The 45 and Up Study
Reply Paid 1005
BROADWAY NSW 2007

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. 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

How is information kept confidential?

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.

Information held is not released in any way that identifies an individual or household. Personally identified 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 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.

Who can access 45 and Up Study information and how?

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.

What type of health information does the 45 and Up Study link to?

Research questions often need to be answered using several different sources of information. Information from 45 and Up Study questionnaires is linked to health and other information that is already routinely collected. This includes information on your current and past health treatments and procedures, and health services you use. As the linkage is ongoing, over time this will include treatments, procedures and services you use in the future. Linking a variety of information sources allows researchers to better understand the factors influencing health and the health needs of the community.

If this information contains any details that could identify you, these details are removed before information is given to researchers. You can read about the 45 and Up Study research underway or call the Infoline on 1300 45 11 45 for more information.

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

I haven’t heard from you in a long time. Am I still in the Study?

There are several possible reasons for not receiving a questionnaire or other contact. For example, if you have moved recently 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.

If you have requested contact by email, our messages may be going to your “junk” folder or your email address may not be up to date.

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

I didn’t join originally but it sounds really important. Can I still enrol?

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

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

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

If contacting us by email or letter, please include your name, date of birth and contact details so we can identify you.

If you no longer wish to participate in the 45 and Up Study, 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:

  • Use the online Withdrawal form
  • Email us
  • Call us on 1300 45 11 45
  • Write to The 45 and Up Study, GPO Box 5289, Sydney NSW 2001

If contacting us by email or letter, please include your name, date of birth and contact details so we can identify you.

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

Your participation in the 45 and Up Study means researchers can take great strides in understanding how Australians are ageing and health planners can use this information to deliver better health services. By participating you have already shown us that you understand the value of your health information.

If you would like to be more involved, why not volunteer to speak to the media? This is one way of letting people know about the Study and the important things it is achieving for the nation’s health.

Journalists from newspapers, news websites, radio stations and TV often want to talk to our participants because human stories are what health is all about.

Here is an example of media coverage where participants have helped to spread the word about the Study: 45 and Up Study meeting attracts media attention

We are always seeking participants who are willing to share their stories, so please get in touch with us if you are interested in helping out. Your details will never be provided to the media without us contacting you to seek permission.

We encourage you to contact us if you have any feedback.

Email

45andUp@saxinstitute.org.au

Call

45 and Up Study Infoline: 1300 45 11 45
Monday – Friday 9am to 5pm (closed public holidays).
Local call costs apply

Write

CONFIDENTIAL
The 45 and Up Study
GPO Box 5289
SYDNEY NSW 2001

Complaints

If you have a complaint about the 45 and Up Study and you would prefer not to contact the Study team directly, you can also contact:

The Ethics Secretariat
The University of NSW
SYDNEY NSW 2052
Tel: (02) 9385 6222
humanethics@unsw.edu.au