Use the 45 and Up Study

The survey collection is ongoing. By 2020, all participants had received three extensive surveys (at least one every five years). The 85,000 participants who received their follow up surveys in 2020 also received questions about the impact of COVID-19.

Study questions are summarised here (XLSX 69KB).

Study questionnaires are here.

Data about past and current health, medication, treatment, diagnostics, and use of health services can be linked to the survey data. The 45 and Up team can link MBS and PBS data. NSW Health data needs to be linked by the Centre for Health Record Linkage (CHeReL). All applications and fees for linkage of NSW data need to go through CHeReL. Other Commonwealth Government organisations are responsible for linking national data.

The Study Data Books provide frequency distributions for most questionnaire data items. Additional useful information includes: Data Dictionaries describe all the available variables, and Technical Notes include information on updates, missing data and the linked Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) data.

Data dictionaries are available for the Medicare Benefits Schedule and Pharmaceutical Benefits Scheme. Data dictionaries for NSW Health data are available on the CHeReL website.

The 45 and Up team can provide some guidance on NSW and national data sources that may be useful for your research, such as the mental health ambulatory care data, disease registry data or the ABS Cause of death data. Please contact the 45 and Up Coordinating Centre to discuss.

Researchers who wish to use Study data are encouraged to make an initial enquiry with the 45 and Up Coordinating Centre by completing information about their project in the Expression of Interest (EOI) form (PDF 2MB).

You may also like to refer to the list of published papers using Study data, and further information about those who have used the Study. To use the Study data you will need approval from an Australian Human Research Ethics Committee.

Researchers wishing to make changes to a current project should submit a Project Amendment form (PDF 2MB).

Fees vary according to the way you use the study, the number of researchers accessing the data (students are covered if their supervisor has access), the number of data sets being used, and duration of the project.

A guide to costs for the 45 and Up data together with the required workspace in the Secure Unified Research Environment (SURE) are here (150 MB). The costs for linking NSW data need to be requested from CHeReL as they perform these linkages.

Contact the 45 and Up Study team to discuss costs for running a Substudy.

Please submit an Expression of Interest (EOI) form (PDF 2MB) to get a detailed quote when planning your research.

All research projects using the 45 and Up Study are required to obtain approval from the following bodies before data can be accessed for research:

-the 45 and Up Study Coordinating Centre

-a local Human Research Ethics Committee as required under the National Statement on Ethical Conduct in Human Research

-relevant data custodians

Yes, this is called a Substudy. A Substudy is a research project that involves actively engaging a subset of the Study participant cohort outside routine data collection. Participants generally need to provide informed consent if they decide to participate in the Substudy. The Substudy data gathered – whether from surveys, biometrics, biospecimens, genetic information – can be linked the 45 and Up surveys and health data of participants. After an agreed period, the data is included in the 45 and Up Study for all researchers to use.

Most of the information you need for estimating sample sizes can be found in the Study Data Books.  There is also information in the publications from the Study. Please contact the 45 and Up Coordinating Centre for further information.

The 45 and Up Study is a population-based study. The collection began over the years 2005-2009 with over 267,000 people from across New South Wales, aged 45 and over completing a baseline questionnaire and consenting to be involved in the ongoing Study, to be followed over time  with regular surveys and linkage to other health data. Details of demographics can be found in the Study Data Books.

As of 2020, the youngest participants were 56 years and the oldest were over 100. It is a diverse cohort with large numbers of participants from different cultural and economic backgrounds including Aboriginal and Torres Strait Islander people, people living in various types of housing including social housing, people living in rural and remote areas, and people with excellent health and those with poor health and multiple complex, chronic conditions.

The cohort was not designed to be strictly representative of the general NSW population because a strictly representative sample would not include sufficient number of individuals from groups of interest such as rural residents and migrants. Increased participation from people aged 80 years and over and people living in rural and remote areas of NSW was achieved by oversampling, based on population level information.

Participants completed the Baseline Questionnaire (2006-2009) and consented to being followed over time (2012-15 and 2018-20). All questionnaires and a summary of questions can be found here. Note a pilot study was conducted in 2005 and a 1000 of these responses are included as part of the study baseline.

The data for your research will be set up in the Secure Unified Research Environment (SURE). SURE is a purpose-built remote-access data research laboratory operated by the Sax Institute providing a secure computing environment for analysis of data. Tools for analysing the data such as SAS, R, STATA, SPSS are readily available in SURE.

Data security and the privacy of participants is of utmost importance. Only deidentified data is provided and all unit record data is required to remained in SURE. A nominated member of each research team has responsibility for ensuring all SURE protocols are met before any aggregated data tables are exported.

Yes. The COVID-19 supplement along with the core 45 and Up follow-up questions went to participants in the second half of 2020. The questions will identify exposure to  COVID-19; experiences with healthcare access; use of and trust in sources of COVID-19 information; and the impact of the outbreak and prevention measures. The COVID-19 questions are in the 2020 follow-up questionnaire here.

Additionally, a series of smaller surveys exploring the ongoing impact of COVID are being conducted in throughout  2020 and 2021.

The 45 and Up Study Biospecimen Collection is increasing. By 2020, over 5,000 biospecimens had been collected with 1,100 genomes sequenced. Researchers with approved projects can invite additional 45 and Up Study participants to donate biospecimens. The biospecimen information can be linked to many years of survey and administrative data to identify cohorts and understand the interaction between lifestyle factors, health, genetics and outcomes. Please contact the 45 and Up Coordinating Centre to discuss use of the biospecimens resource.

45 and Up Study data includes coding of residential location to Statistical Area 2 (SA2). Additional, fine level, geocoded data including latitude and longitude, Primary Health Network, Local Health District and various other catchment areas are also available for approved research. Mechanisms have been established to protect participants confidentiality.

The 45 and Up Study can be used to answer a wide range of research questions, including but not limited to those on cancer, heart disease, mental health, chronic conditions, communicable diseases, health service utilisation, the impact of the environment and lifestyle on health, accessibility and equity of health outcomes. There have been over 130 research projects and more than 700 publications that have used 45 and Up Study data.

Research publications that have used the Study can be found here and examples of research projects can be found here.

In some cases, 45 and Up analytical team may be commissioned to support large projects.

In other cases, the 45 and Up team may be able to suggest analysts who could collaborate to support your research.

Yes. The 45 and Up Study data has been used by researchers across Australia and internationally.

Before submitting a publication or conference abstract please send to the 45 and Up Study team for review. The checklist of requirements is here.

The recommended acknowledgement text is as follows:

“This research was completed using data collected through the 45 and Up Study (www.saxinstitute.org.au). The 45 and Up Study is managed by the Sax Institute in collaboration with major partner Cancer Council NSW; and partners: the Heart Foundation; NSW Ministry of Health; NSW Department of Communities and Justice; and Australian Red Cross Lifeblood. We thank the many thousands of people participating in the 45 and Up Study.”