As a participant in the 45 and Up Study, you are one of more than 250,000 “national treasures” helping us to better understand healthy ageing.

This page is where you’ll find useful 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 commenced testing questions for the next round of follow-up, which will begin in June 2017 and continue for four years. 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 change your contact details, please  email us or call the Study Infoline on 1300 45 11 45.

If contacting us by email, please include your full name plus your date of birth or current/previous address so we can identify you.

Even if you no longer live in NSW you remain eligible to participate in the Study. In fact, we now have participants living in all areas of Australia and overseas.

If you don’t have a current postal address, for example because you are travelling, please let us know and we can put this in our records. On a date specified by you we can recontact you to confirm your current address at that time, or you can give us your updated information at any time.

A “sub-study” takes place when 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 another questionnaire or be interviewed by a researcher. Participation in sub-studies is voluntary. You can decline to participate in a sub-study but still remain a participant in the 45 and Up Study.

To date, there have been 14 sub-studies involving 45 and Up participants. Check your Participant Toolkit for updates on new sub-studies. If you have a question about participating in a sub-study, please refer to the relevant participant information documents below, or contact the 45 and Up coordinating centre. For a list of research projects under way using 45 and Up (including sub-studies), please visit the research projects page.

ADULT WHOOPING COUGH STUDY

Pertussis (whooping cough) is one of the most poorly controlled vaccine preventable diseases, both in Australia and many other countries around the world, and despite widespread childhood vaccination programs, outbreaks continue to occur every few years. Pertussis in young children is a well recognised public health problem, however it is less well known that pertussis is also common among older adults.

The impact of pertussis on adult health is substantial and a significant proportion of the elderly with a diagnosis are subsequently hospitalised. There is limited data on vaccine effectiveness to inform policymakers regarding who should be most cost-effectively targeted for vaccination.

By comparing people who have had pertussis with those who have not, this research project aims to identify the effectiveness of the pertussis vaccine in older adult populations against the occurrence of pertussis, hospitalisation for respiratory illness and other health outcomes.

Invited participants will be asked to complete a brief questionnaire (asking particularly about whooping cough diagnoses; immunisation and other risk factors for disease) and provide their general practitioner (GP) details so that GPs can be contacted to confirm this information.

Maintain your brain

Dementia affects approximately 44 million people worldwide. As the population ages, the prevalence of dementia is increasing. The Maintain Your Brain (MYB) research project is a trial of multiple online interventions designed to target modifiable risk factors for Alzheimer’s disease and dementia in people aged 55-75 years. Risk factors to be addressed are physical inactivity, cognitive inactivity, depression, overweight and obesity, and poor diet.

Specifically, this research project aims to:

  • develop an eHealth platform that delivers interventions over the internet
  • determine the efficacy of the eHealth platform to reduce the rate of cognitive decline in people without dementia
  • determine the efficacy of the eHealth platform to delay the onset of dementia
  • examine the cost-effectiveness of the program.

The research project includes 3 phases: validation, pilot and main. You may be invited to participate in any of these phases.

Women’s Self-Care Strategies Project

In recent times there has been an exponential rise in interest in and use of self-care, particularly amongst women. In this project, drawing on a large sample of women suffering from chronic illnesses, the researchers will provide critical insight into women’s self-care practices and structures of disadvantage. This project will be the first worldwide to document previously ‘hidden’ self-care practices, providing a new framework for understanding and promoting women’s health and wellbeing in the context of chronic illness.

Specifically, this study aims to:

  • Systematically map self-care practices by Australian women
  • Provide insight into how their self-care practices are mediated by individual biographies and structural inequalities.

NB: self-care refers to activities undertaken for “enhancing health, preventing disease, limiting illness, and restoring health” (WHO 2009), principally or solely directed by the individual (i.e. minimal practitioner involvement).

Men’s Perspectives on Falls and Preventing Falls

Falls are a significant and growing public health concern among older people, affecting both men and women. Older women are at greater risk of falls than older men and experience more fall-related injury, while older men have higher fall-related mortality.

Fall prevention programs, such as Stepping On, which challenge older people to realistically appraise their risk of falling and gain knowledge about and incorporate safe practices into their everyday lives, have been shown to be effective in both reducing falls and the negative consequences of falls.

However, women are much more likely than men to engage in fall prevention programs, and so, to gain the benefits of participating in these programs. Little research has been done to date which specifically considers men’s perspectives on falls and preventing falls, their awareness of fall prevention programs, or their perceptions of, and/or experiences with programs such as Stepping On.

This project is looking at the experiences of men who have had a recent fall, what they did as a result of having the fall and what they think about preventing falls. This information will assist program developers and coordinators to adjust and adapt fall prevention programs to better meet the needs and interests of older men and thereby improve the accessibility and acceptability of these programs. Invited participants are asked to complete a telephone interview with the researchers, lasting approximately 30-60 minutes.

Sexual Wellbeing and Quality of Life after Prostate Cancer

This project has invited a sample of men who indicated that they have, or have had, prostate cancer to participate in an online survey. A hard copy of the survey is also available if preferred. The results will provide the research team with an understanding of the specific experiences and needs of heterosexual and non-heterosexual men with prostate cancer. This information and knowledge will be used to inform health care providers to deliver tailored interventions and facilitate ongoing support to heterosexual, gay and bisexual men with prostate cancer and prevent difficulties and distress with sexual wellbeing post-cancer.

Patients’ Experiences Project

The Patients’ Experiences Project is a large scale project for 20,000 participants in the 45 and Up Study who have been in hospital in NSW at any time between 1 January and 30 June 2014. It aims to describe patients’ experiences in NSW hospitals and, in more detail, the experiences of patients who had a healthcare incident during their hospital stay. We want to know what types of incidents occur, how often and how they are handled.

The project will also look at how the experiences of patients who had a healthcare incident compare with those who did not, so participants are asked to complete the questionnaire even if they did not have a healthcare incident.

The project will make recommendations to improve the way that healthcare incidents are managed.

“Successful Transition to a Healthy Retirement” Project

This study looked at the process of how and when people transition into retirement. As the Baby Boomer generation moves into retirement, their patterns of work, leisure and overall adjustment are likely to be different to those of earlier generations. Therefore, it is important to understand what factors are associated with healthy and enjoyable retirements in order to provide the best support and opportunities to maximise people’s ability to adjust to changing needs and environments.

Life Histories and Health Project

This project targeted 60-64-year-olds to investigate how family, work, housing and health experiences earlier in life influence health, productivity and wellbeing for people in late middle-age.

Gaining an understanding of health risks and protective factors over this time will inform public health programs to prevent and respond to chronic disease and other major health challenges.

Skin Health Study

This study aimed to improve our understanding of how sun, lifestyle and viruses can together cause skin cancer. It is a study of the common skin cancers, basal cell carcinoma (BCC) and squamous cell carcinoma (SCC).

Housing and Independent Living (HAIL) Project

The HAIL Project aimed to determine how people’s homes and surrounding environments support them to live independently as they grow older.

Social, Economic and Environmental Factors (SEEF) Project

This project aimed to identify how social, economic and environmental factors influence the health and wellbeing of our population in mid to later life.

Diabetes Risk Factor Survey

This survey aimed to identify how Australians manage risk factors for diabetes and cardiovascular disease and how these impact on their health and wellbeing.

Link-Up Project

This project is an extension of the 45 and Up Study that aimed to collect further information and blood samples from those people taking part. These will be used for approved research projects investigating factors affecting the health of Australians in mid to later life. They may be used to look at a wide range of factors able to be measured in blood such as cholesterol, antibodies and blood sugars.

CREDO Project

Depression and cardiovascular disease are common in our community and often present together. The object of this research study was to investigate the effectiveness of an evidence-based internet program for depressive symptoms in patients being treated for cardiovascular disease.

If you have already completed the baseline questionnaire but no longer want to participate in the 45 and Up Study, you can withdraw at any time. Your decision regarding participation will not affect your healthcare or disadvantage you in any way.

There are two types of withdrawal from the Study:

  1. No further contact: where you decide 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.
  2. Complete withdrawal: where you would like to completely withdraw from the Study – meaning you will no longer be contacted and your health will no longer be followed.

To request no further contact or complete withdrawal, please call the Study Infoline on 1300 45 11 45, email us (making sure to include your request as well as your name, date of birth and contact details so we can identify you), or fill out the form below.

These changes will apply from the time you notify the Study as it is not possible to withdraw information already used for research or publication.

How will you guarantee information is kept confidential?

The 45 and Up Study is bound by Commonwealth and State privacy legislation.

All information collected will be treated with absolute confidentiality and used for health research only.

No information will be released in a way that would enable an individual or household to be identified, except as is required by law. Information gathered will be stored, analysed and reported on with all individual identifying details removed to ensure total security, confidentiality and anonymity.

In addition to meeting Commonwealth and State legal requirements, the Study is overseen by the University of NSW Human Research Ethics Committee to guarantee complete security, confidentiality and anonymity of participants.

Who can access the Study information and how?

No information held by the 45 and Up Study will be released in any way that would enable an individual or household to be identified. Any information gathered is stored with all individual identifying details removed to ensure total security, confidentiality and anonymity. Personally identified information that the Study holds will only be released with your consent or as required by law.

Researchers using the Study do not have any direct access to information we collect from questionnaires or from sources of routinely collected health information.

To access any Study information, researchers, including the founding collaborators, must meet a rigorous approvals process. They must prove their proposal to use the Study information is credible and seek approval from independent ethics committees.

Only after successfully meeting all these requirements will a researcher be able to access Study information. Once their research is finished they will destroy their copy of the information.

All staff and researchers working on the Study sign confidentiality agreements and follow strict protocols and procedures to ensure the data and information are protected. All Study data is located in a security building where access is restricted to 45 and Up Study staff.

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

Information from 45 and Up Study questionnaires will be linked to health information that is already routinely collected. This includes information on your current, past and future health and treatments and procedures, including health services you use. Linking a variety of information sources allows researchers to better understand the factors influencing health and the health needs of the community.

There are several health information sources researchers may use to help answer their research questions. If this information contains any details that could identify you, these will be removed before researchers access it. You can read about the 45 and Up Study research underway or call the Infoline on 1300 45 11 45 for more information.

Health and other records that may be used in the 45 and Up Study include:

  • Admissions to hospital, information on injuries, infectious diseases, radiotherapy and mental health services and hospital waiting times (source: NSW Health)
  • Use of emergency department services,midwives and birth data (source: NSW Health)
  • Disability information, home and community care, and use of aged care facilities (sources: NSW Health, Australian Department of Health and Ageing, Australian Institute of Health and Welfare – AIHW)
  • Medicare enrolment details (information such as your name, address and date of birth), Medicare claims information and vaccination information if it is recorded for adults in future (source: Medicare Australia)
  • Dispensed medicines subsidised under the Pharmaceutical Benefits Scheme (sources: Medicare Australia, Repatriation Pharmaceutical Benefits Scheme)
  • Use of subsidised hearing services (Source: Medicare Australia)
  • Health and health services, home care facilities and services paid for by the Department of Veterans’ Affairs – DVA (Source: DVA)
  • Use of ambulance services (Source: Ambulance Service NSW)
  • Cancer registrations (sources: NSW Cancer Institute, AIHW)
  • Death records (sources: NSW Registry of Births, Deaths and Marriages, National Death Index)
  • Licences issued and accidents (source: Roads and Maritime Services)
  • Breast, cervical, prostate and bowel cancer screening records (source: a range of services)
  • Dialysis and transplants (source: Australian and New Zealand Dialysis and Transplant Registry).

The 45 and Up Study follow-up

Who receives the questionnaire?

Everyone who is already part of the 45 and Up Study is eligible to receive a follow-up questionnaire. More than 40,000 people were sent a questionnaire in 2012 and and a further 86,250 questionnaires were mailed in November 2013. Over the next year or two, we will be recontacting the rest of our participants. If you’re a 45 and Up participant (or think you may be but can’t quite remember), contact our Infoline on 1300 45 11 45, or email the 45 and Up coordinating centre to ask for more information. We don’t yet have mailing dates for the next rounds of the follow-up, but we can confirm participation – and update your contact details if needed – if you get in touch.

My spouse and I both joined the Study. Why has only one of us has received the follow-up questionnaire?

There are several possible reasons for not receiving a follow-up questionnaire at the same time as someone else you know. These include:

  • The other person may have an earlier registration date with 45 and Up even if you posted your original surveys at the same time –- due to postal or data entry delay for example
  • We may have incorrect contact information in our database if we’ve had previous returned mail and haven’t been able to find a new address for you. Even where two or more participants have the same address, in order to maintain the highest levels of confidentiality, we do not link participant contact records
  • You may have previously requested that we exclude you from further contact –- if you were moving house for example, or going on holiday or into hospital.

Can I complete the follow-up questionnaire online?

At this stage, the follow-up questionnaire is only available as a printed booklet. The questionnaires you can view on this website are samples only and cannot be used to participate in the follow-up. Please contact us if you require a replacement questionnaire.

If you would like us to contact you by email and have not yet provided an email address, or you want to check the details we hold are correct, please call our Infoline on 1300 45 11 45 or email us. If contacting us by email, please include your full name and sufficient contact information for us to identify you, such as your date of birth or current/previous address.

You can also nominate to receive your newsletter by email rather than in the post.

Where do I send my completed 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

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

Thank you for your interest in participating, but unfortunately, we are not currently accepting new enrolments for the Study. We may do so in the future, however, and at that time we would announce this on our website and through the media.

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. Just by participating you have 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 how participants are helping us spread the word about the Study: 45 and Up participants in the spotlight.

We are always seeking participants who are willing to share their stories, so please get in touch with the 45 and Up coordinating centre or the Sax Institute Communications team if you are interested in helping out.

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

Email us

Visit the main Contact page on this website and fill in the “45 and Up Study” enquiry form.

Call us

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

Write to us

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

Complaints

If you have a complaint about the Study and you would prefer not to contact the Study coordinating centre, you can also contact:

The Ethics Secretariat
The University of NSW
SYDNEY NSW 2052
Tel: (02) 9385 4234
Email: ethics.sec@unsw.edu.au