Information for researchers
The Study Resource
Any individual or group can use the data held by the 45 and Up Study, provided that ethical and scientific quality criteria are met.
The process for applying to use the 45 and Up Study resource depends on the type of project being undertaken:
There are some variables from the questionnaire and additional information about participants that could be useful to researchers that are not released as part of the standard baseline dataset. Requests for access to these data will be reviewed on a project by project basis. These data includes information on date of birth, Aboriginal status, residential postcode, geocoding and free text. For more information or to apply for this data please click here.
Data collection for the 45 and Up Study commenced in February 2006. We have now recruited over 266,000 people aged 45 and over, which is 10% of all people in this age group in NSW.
Australia has no other longitudinal study of the scale of the 45 and Up Study; its large size gives the Study power to answer research questions quickly, and also to address a diverse range of research questions, even those relating to uncommon conditions and small population groups
The 45 and Up Study provides the opportunity to answer almost any question about health and ageing and we actively encourage use of the resource by any individual or group provided that ethical and scientific quality criteria are met.
The 45 and Up Study Data Book provides a summary of data from 266,848 participants that joined the study.
Researchers, evaluators and policy makers are encouraged to use data from this unique study. A list of projects that have been given approval to use data from the 45 and Up Study can be found here.
Use of the 45 and Up Study resource currently comes under three categories:
- Baseline questionnaire data: Data from the baseline self-administered questionnaire completed by cohort participants can be purchased by interested individuals or groups for independent analyses. These data include information on: health; lifestyle; demographics; and social, economic and other factors that might influence health. More …
- Linkage studies: Projects using baseline questionnaire data linked with other health data can also be undertaken. The 45 and Up Study has in-principle ethical approval to link to data sets held by Medicare Australia (including MBS and PBS data sets), Department of Health and Ageing, Department of Veterans’ Affairs, the Australian Institute of Health and Welfare and the Sydney South West Area Health Service. The 45 and Up Study is also included in the Master Linkage Key for the Centre for Health Record Linkage (CHeReL). More …
- Sub-studies: Participants in the 45 and Up Study have given consent to be approached to participate in additional studies, e.g., additional mailed surveys. This provides the opportunity for interested individuals or groups to look more closely at the health of particular populations – people with diabetes, for example, or those living in remote parts of NSW. More …
Website is currently being updated. Contact us to request an application form or amendment form.
What is a 45 and Up Study Data Licence?
Organisations, research groups or individuals must purchase a Data Licence to conduct research using data from the 45 and Up Study. A licence can be purchased for a specified number of users over a set period of time (1 to 3 years).
A Data Licence allows access to the “Main Database” which includes:
- Data initially collected by the Sax Institute from baseline questionnaires and subsequent data from follow-up questionnaires.
- Data collected in sub-studies conducted by the Sax Institute or other researchers, when these data are contributed to the collaborative resource.
- Data from external datasets when linked to data from the “Main Database”, including linkages facilitated through the Centre for Health Record Linkage (the CHeReL) and data provided by Medicare Australia.
How much will a Data Licence cost?
The cost of a one year Data Licence is based on the number of users as follows (excluding GST):
- A single user or one student and a lead investigator: $7,500
- Up to 5 users: $32,000
- Up to 10 users: $60,000
- Up to 25 users: $100,000
- Up to 50 users: $150,000
- Over 50 users: price on application
These charges will be discounted by 10% per year to a maximum of 3 years, as follows:
|
Number of users
|
1 year licence
total cost
|
2 year total cost
(annual cost)
|
3 year total cost
(annual cost)
|
|
1
|
$7,500 excl. GST
|
$14,250 ($7,125) excl. GST
|
$21,000 ($7,000) excl. GST
|
|
Up to 5
|
$32,000 excl. GST
|
$60,800 ($30,400) excl. GST
|
$89,600 ($29,867) excl. GST
|
|
Up to 10
|
$60,000 excl. GST
|
$114,000 ($57,000) excl. GST
|
$168,000 ($56,000) excl. GST
|
|
Up to 25
|
$100,000 excl. GST
|
$190,000 ($95,000) excl. GST
|
$280,000 ($93,333) excl. GST
|
Are there additional charges?
Additional charges will apply where the Main Database is being linked with external databases or where study participants are being re-contacted (sub-studies). These additional charges will cover operating costs such as staff time and consumables. A quote will be provided for these charges at the time of project application.
What are the conditions for use?
The 45 and Up Study data can only be used with current project approval and for the purpose for which approval has been granted, as per the 45 and Up Study Access Policy.
A Data Licence must be purchased to access the Main Database, as described above, and users associated with a Data Licence must normally be employed by the same institution as the owner of the Data Licence.
A Data Licence must be active at all times throughout a project when data is to be extracted from the Main Database. This includes the primary extraction of data, extraction of follow up data or data collected through sub-studies, and the extraction of data for facilitating linkages with external datasets.
At the time of data extraction from the Main Database, the following individuals must be covered by a Data Licence:
- the responsible lead investigator as nominated on the project approval
- any other chief investigators who will access unit record data
- all analysts or biostatisticians on the project who will access unit record data
- any students who will access unit record data
Where the number of users increases above the allowance for the Data Licence, the owner will be required to either: 1. increase the level of the Data Licence and the difference in costs paid; or 2. Remove a user from the Data Licence.
Payment of Data Licence Fees and additional charges (if applicable)
All approvals for use of data will be subject to the applicant having the requisite funding, both to conduct the project and to pay any fees and charges for use of the Study resource as set out in this policy.
To obtain a quote for a data licence or if you require further information about applying to use the Study resource please send an online enquiry by clicking here or call the 45 and Up Study Infoline on 1300 45 11 45 (Mon-Fri, 9am-5pm).
Background
The 45 and Up Study is a large, general population cohort study designed to investigate healthy ageing. It has recruited 250,000 men and women aged 45 and over from the NSW general population. It will link data collected prospectively and longitudinally from participants with population databases on health and health service use. It is derived from, but not designed to be representative of, the general population (see below) and spans the adult lifespan from 45 onwards, with no upper age limit, unlike other large scale cohorts world-wide. The large number of participants will allow evaluation of differential effects of risk factors, interventions and health services use by age and other population attributes.
Funding for the infrastructure of the Study, including recruitment of participants, data entry and staffing of the Coordinating Centre, is being provided by The Cancer Council NSW; the National Heart Foundation (NSW Division); beyondblue: the national depression initiative; NSW Health; Ageing, Disability and Home Care, Department of Human Services NSW; UnitingCare Ageing; the MBF Foundation; Macquarie Group Foundation; Freehills and the Baxter Charitable Foundation, Alma Hazel Eddy Trust (both managed by Perpetual Ltd).
The 45 and Up Study is a prospective study that has recruited over 250,000 men and women from the NSW general population. Potential participants were randomly sampled from the 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, with accrual of over 36,000 participants in 2006. The remainder of the cohort was recruited over the period 2007-08, with the full cohort reached December 2008. Linkage to health datasets commenced in 2008.
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, including age, postcode, education, ethnicity, type of housing; lifestyle and habits, including physical activity, smoking and alcohol consumption; current medications, history of disease and surgical procedures; functional capacity (MOS-PF) and psychological distress (Kessler-10); social support (Duke sub-scale), employment status, paid and unpaid work and income. Information to be ascertained through data linkage includes: health services use (including Medicare, Pharmaceutical Benefits Scheme, hospitalisations [with details of patterns of care] and aged care); deaths, with underlying cause; and certain incident morbidities, e.g., 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. Hence, the research projects outlined here 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 (e.g. British Doctors’ Study, US Cancer Prevention Studies, European Prospective Investigation into Cancer and Nutrition). Where population estimates of exposure or disease prevalence are required for this project, to assess the impact of findings on the wider population, more representative survey data will be used where appropriate (e.g., from the NSW Health Survey). 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. The 45 and Up 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.
Ethical considerations:
The study has received ethics approval from the University of NSW Human Research Ethics Committee and in-principle approval for future data linkage from NSW Health, the Department of Health and Ageing, Medicare Australia, the Department of Veterans’ Affairs, The Australian Institute of Health and Welfare, the Sydney South West Area Health Service and the NSW Cancer Institute. Individual projects using linked data will require separate approval from the relevant ethics committee and data custodian.
First mailout:
The first mailout for the Study occurred in February 2006, where around 36,000 individuals joined the Study. Preliminary results from this indicate that the study methods are feasible and acceptable, that the questionnaire is completed with minimal missing values and that sufficient heterogeneity of exposure is present in the cohort. The response rate to the Study is around 18%, similar to other studies requiring extensive consent for data linkage.
The sampling frame for the 45 and Up Study reflects information about potential Study candidates. Summaries of characteristics of actual participants are contained in the Study Data Book.
Participants were randomly selected from Medicare Australia records, and volunteers were permitted.