This page contains useful resources for researchers interested in using the 45 and Up Study.

More information about the Study, Questionnaires, Data Books, Data Dictionaries, research projects under way, governance and policies can be found in the left hand menu. A full list of publications from the Study can be found in our Publications section under published research.

Don’t forget to contact us when your research has been accepted for publication.

Your toolkit

There are three ways to use the 45 and Up Study infrastructure:

  1. Access the existing questionnaire data and conduct analysis with/without linkage to other datasets
  2. Request additional data to be asked of the participants
  3. Undertake intervention studies with the cohort members.

Data costs are provided for option 1 below under ‘data costs’. If the proposed project involves option 2 or 3, contact the Study Director, 45 and Up Study to discuss the project prior to considering completing an application form.

Access to the 45 and Up Study dataset and cohort is available to any bona fide researcher who:

  • Has a scientifically sound and feasible research proposal
  • Has ethics approval for the proposal and data custodian approval for access to linked data, if required for the project
  • Can meet 45 and Up Study licence and SURE user charges. Having the required funds in hand, however, is not a pre-condition for submission of an expression of interest (see Step 1).

Study Data Access Process is as follows:

Step 1: Researcher submits a 45 and Up Study Research Expression of Interest (EOI) form.

Sax Institute Data Access Committee assesses feasibility and provides estimates of probability of approval with quotation. A password to access the full research portal is also provided. The researcher then seeks funding for the project.

Step 2: Once project funding is approved, the researcher completes the project application form online, in the form of a brief NHMRC-style grant application.

This includes the  following:

45 and Up Study Research Project Application Form

45 and Up Study Research Project Variable Checklist

45 and Up Study MBS/PBS Checklists, if applicable

Sax Institute’s Data Access Committee approves the application if scientifically sound, feasible and consistent with participants’ consent; and provides a definitive estimate of charges.

Step 3: The researcher signs the contract, gains any necessary approvals that have not already been obtained and pays first year’s charges. Once payment has been made the researcher is given access to the data in SURE.

Step 4: In the event of any changes to the approved project protocol, the researcher submits a 45 and Up Study Research Project Amendment form. Written approval for amendments must be obtained before they are implemented in practice.

Step 5:  A 45 and Up Study Research Project Progress Final Report form for all 45 and Up Study research projects is required. The information you provide will be used to inform our partners, Study participants and to update our website and other information documents.

For additional information please contact the 45 and Up Study Co-ordinating Centre on 45andup.research@saxinstitute.org.au

 

Researcher licences

To access 45 and Up Study questionnaire data, a data licence is required by each researcher accessing the data through SURE. There are currently two datasets available: baseline (over 250,000 records) and first follow-up including SEEF (around 137,000 records). The licence fee per researcher per year is:

  • $8,370 + GST for the first questionnaire dataset; and
  • $4,185 + GST for second questionnaire dataset.

Institutional licences are able to be negotiated for multiple licences from the same centre or Institution.

PhD students do not need to pay licence fees. However their supervisor is required to have a licence which covers their specific project.

Project data preparation fees

A data preparation fee of $3,850 + GST per occasion is charged for projects that require the 45 and Up baseline and/or follow-up dataset/s to:

  • be linked with external databases such as emergency presentations, or hospital admissions through the NSW Health data linkage facility CHeReL. This does not include data linkage fees from CHeReL of other linkage facilities
  • be linked with Medicare Benefits Schedule (MBS)
  • be linked with Pharmaceutical Benefits Scheme (PBS) data
  • include geocoded data.

Project data access fees

Data access for all 45 and Up Study projects is through our secure facility SURE. Current project fees are $3,638 for establishment and $2,426 per year for storage and operations. Current user fees are from $2,426 per user per year depending on the resources required. For further information see 2017 Schedule of SURE access charges (PDF 100KB).

 

Sampling and recruitment

This prospective study has recruited more than 250,000 men and women from the NSW general population. Potential participants were randomly sampled from the Department of Human Services (formerly Medicare Australia) database and mailed a Study questionnaire and information leaflet. There is oversampling of individuals from rural areas and of those aged 80 and over. Participants joined the Study by completing the questionnaire and providing signed consent for follow-up and linkage to a range of health databases. Recruitment commenced in February 2006, when more than 36,000 participants joined the Study. The remainder of the cohort was recruited over the period 2007-09, with the full cohort reached by December 2009. Linkage to health data sets began in 2008. The response rate to the Study is about 18%, similar to other studies requiring extensive consent for data linkage. The first follow-up of participants began in 2012, with 40,000 questionnaires mailed out. A further 86,000 questionnaires were mailed in late 2013 and the remainder of the cohort will be resurveyed over the next couple of years.

The questionnaire

Information on the health of Study participants is collected on the baseline questionnaire and will be enhanced through subsequent data linkage. Questionnaire information includes: demographic data such as age, postcode, education, ethnicity and type of housing; lifestyle and habits including physical activity, smoking and alcohol consumption; current medications; history of disease; surgical procedures; functional capacity (MOS-PF) and psychological distress (Kessler-10); social support (Duke sub-scale) and employment status, paid and unpaid work and income.

Information available through data linkage includes: health services use including MBS and PBS use, hospitalisations (with details of patterns of care) and aged care; deaths, with underlying cause; and certain incident morbidities such as myocardial infarction, selected fractures, cancer and diabetes (as indicated by hospitalisation, death records, cancer registrations, specified Medicare items and medication use).

Representativeness and generalisability

Because of the nature of cohort studies, including the “healthy cohort effect”, the 45 and Up Study will not necessarily be representative of the general NSW population 45 and over, nor is it designed to be. Research projects using the Study relate to internal comparisons within the cohort, which, provided sufficient heterogeneity of exposure is present, are valid and underlie the many contributions that cohort studies have made to the understanding of health world-wide, despite being derived from specific population sub-groups. Where population estimates of exposure or disease prevalence are required, more representative survey data will be used where appropriate (e.g., from the NSW Health Survey) to assess the impact of findings on the wider population. Nevertheless, the 45 and Up Study is likely to be among the most representative large-scale cohort studies conducted world-wide.

Validation

Questionnaire and other measurement data from large-scale cohort studies are necessarily brief, to allow a large number of participants to be included feasibly. This Study will use more detailed biophysical, serological and questionnaire data from other more detailed studies to validate the brief measures used, particularly those for height, weight, physical activity and psychological distress, and to quantify any likely measurement error, so that it can be investigated and accounted for.

Technical review of papers

Before you publish a paper reporting analyses of the 45 and Up Study data, including an abstract for a conference presentation, it should be submitted to the 45 and Up Study coordinating centre for technical review.

For more information, please read the Guidelines for authors regarding technical review of 45 and Up Study papers (PDF 320 KB).

How do I correctly acknowledge the 45 and Up Study in my publication/paper/presentation?

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 National Heart Foundation of Australia (NSW Division); NSW Ministry of Health;  NSW Government Family & Community Services – Ageing, Carers and the Disability Council NSW; and the Australian Red Cross Blood Service. We thank the many thousands of people participating in the 45 and Up Study.”

If you can’t find an answer to your query below or in the left hand menu, please contact the 45 and Up Study Coordinating Centre on 45andup.research@saxinstitute.org.au

What is the research focus of the Study?

The Study will follow the health of participants to examine which factors are associated with good or poor health as people grow older. Initially the focus will be on the burden of and risk factors for common conditions that affect us as we age such as cancer, obesity, arthritis, depression, cardiovascular disease and diabetes. The Study will also look at social, economic and environmental issues that affect health, such as rural/urban differences, retirement, ethnicity, and the wellbeing of people aged 80 and over.

How representative is the cohort?

The cohort comprises more than a quarter of million NSW men and women aged 45 and over — around 10% of the State population in this age group — who have completed the Baseline Questionnaire and consented to take part in the Study. The cohort is 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 has been achieved by oversampling, based on population level information.

Who can access the Study and how?

Any bona fide health researcher with a proposal to use Study data who has or would likely gain approval of a properly constituted human research ethics committee, may access Study data. Researchers who wish to use Study data are encouraged to apply to the Sax Institute with details of their project via the Expression of Interest (EOI) form. You may also like to refer to our list of research projects using Study data that are currently under way and our list of published papers using Study data.

What routinely collected  health information will the Study link to?

Participants have agreed to have their information collected from Study questionnaires linked to routinely collected health information including procedures and services. This is drawn from data sets such as the Medicare Australia Medical and Pharmaceutical benefits data ,the NSW Central Cancer Registry, the NSW Admitted Patients Data Collection and death registration data.

Linkage of Study data to NSW and ACT health data sets takes place through the NSW Centre for Health Record Linkage (CHeReL), which has included the Study in its Master Linkage Key (MLK). This inclusion means that linkages with any other data sets in the MLK can readily be made and updated, and made available to researchers.

Where can I find specific cohort information?

First peruse the Study questionnaires and the Study Data Books, which provide frequency distributions for most questionnaire data items.  Meta data from linkable data sets are available through the CHeReL  or, for Medicare Australia data, from the Medicare Benefits Schedule and Pharmaceutical Benefits Scheme.

Are follow-up questionnaire data available?

Collection of questionnaire-based follow-up data from the cohort began in late 2010, with a mailing to the first 100,000 eligible Study participants: 60,404 returned completed questionnaires as part of the research project: Social, Environmental and Economic Factors in health. This dataset is now part of the routine follow up questionnaire dataset. Wave 2 follow-up occurred as follows:

  • mailing to 41,440 participants in September 2012, with a questionnaire return rate of 65% and data on over 27,000 participants being available
  • mailing to 86,250 participants in November 2013, with a questionnaire return rate of 58% and data on over 50,000 participants being available
  • mailing to 52,644 participants in December 2014, with a questionnaire return rate of 54% and data becoming available by the end of the year
  • mailing to just over 60,000 participants in August 2015 with data still being collected and expected to be available by mid 2016.

Subsequent waves of follow-up will continue on a rolling, five-year basis beginning in 2016. Copies of the follow-up questionnaires are available.

What form does the Medicare Australia data take?

Medicare data are provided as unit record data of individual Medical Benefits Schedule (MBS) items for which subsidies are paid. A GP visit with a referral for pathology and imaging would therefore have separate records for each service for which a benefit has been paid. Item records also include some limited information about the service provider. There is no direct diagnostic information in these data, however where the item is specific to a condition it can often be derived.

Pharmaceutical Benefits Scheme (PBS) data are provided as unit record data for any dispensed item (medication) on the PBS schedule for which a subsidy is paid prior to 2012. A subsidy is paid only if the scheduled cost is higher than the co-payment required of the person for whom the medication is dispensed. The level of co-payment depends on a person’s concession and safety net status. This means that particular items may or may not be recorded depending on the price of item (which can increase or decrease), if the person’s status changes or if they reach the safety net threshold. From 2012 onwards all dispensed medications, even if there is no subsidy are included. Current information on co-payments can be found on the Department of Health and Ageing website.

What period does the Medicare Australia data cover?

The Study receives up to five years of PBS and MBS data for participants each time a request is made to the Department of Human Services. The first data set requested was for the first 103,041 Study participants and included service records from the beginning of June 2004 until the end of December 2008. Subsequent data updates have been for the entire Study cohort and cover the period from the beginning of September 2005 to the end of December 2014.

How can I determine the likely sample size of Study participants relevant to my research and/or the number of events of interest that have occurred in them?

Most of the information you need for estimating sample sizes can be found in the Study Data Books. There is also a lot of information on event rates in the published results from the Study projects. Routinely collected and published cancer data and death data, for example, will also assist in estimating event rates.