Data and technical information

The COVID Data Hub includes: data from the COVID supplement in the 2020 Wave 3 follow up survey; data from the series of five COVID Insights surveys conducted from 2020 to 2022; and demographics such as age, sex, chronic conditions, cultural and linguistic diversity and disability.

• Download the COVID Data Hub Factsheet 
• Download the COVID Data Hub Technical Note 

The Chronic Conditions Umbrella Program Linkage (CUPL) is an enduring linked dataset which connects data from the 45 and Up Study with 10 administrative health datasets, improving the quality, quantity and efficiency of chronic conditions research in Australia. CUPL will be piloted in 2023 and made available more generally across the research community from early 2024.

• Download the CUPL Factsheet

• Find out how to apply for CUPL

A summary of all questions collected across the 45 and Up Study is available as a downloadable spreadsheet.

• Download Questions Summary

Baseline questionnaire

Information on the health of 45 and Up Study participants has been collected using a Baseline Questionnaire that was mailed to people in the target age range selected at random from the Medicare Australia enrolment database.The baseline data collected covers more than a quarter of a million men and women aged 45 and over.

People living in rural areas and those aged 80 years and over were oversampled so we could obtain a particularly clear statistical picture of these groups. Separate questionnaires were devised for men and women so we could ask questions specific to each group.

• Download the Baseline Questionnaire for Women (PDF 537KB)
• Download the Baseline Questionnaire for Men (PDF 537KB)
• Download the leaflet Consent form and participant information for baseline questionnaire (PDF 285KB)

The results of information gathered from both baseline questionnaires can be found in the Study’s Data Book.

Follow-up questionnaires

At least every five years participants are sent a follow-up questionnaire to identify health and lifestyle changes. Because of the large number of participants, the questionnaires are rolled out in phases. The first follow-ups were undertaken in 2012, 2013, 2014 and 2015. The second follow-ups were rolled out in 2018, 2019 and 2020. Many of the questions asked in the surveys are repeated, but there are also new questions, such as those about the impact of COVID-19 in the 2020 survey.

 Download the first follow-up questionnaires:

• 2012 Follow Up 45 and Up Study MEN
• 2012 Follow Up 45 and Up Study WOMEN
• 2013 Follow Up 45 and Up Study MEN
• 2013 Follow Up 45 and Up Study WOMEN
• 2014 Follow Up 45 and Up Study MEN
• 2014 Follow Up 45 and Up Study WOMEN
• 2015 Follow Up 45 and Up Study MEN
• 2015 Follow Up 45 and Up Study WOMEN
•  Follow-up Questionnaire Information for Participants (PDF 409 KB)

 Download the second follow-up questionnaires:

• 2018 Follow Up 45 and Up Study MEN
• 2018 Follow Up 45 and Up Study WOMEN
• 2019 Follow Up 45 and Up Study MEN
• 2019 Follow Up 45 and Up Study WOMEN
• 2020 Follow Up 45 and Up Study MEN
• 2020 Follow Up 45 and Up Study WOMEN

The Data Books summarise prevalence of participants’ survey responses and characteristics.

View and download the data books (as PDFs) for all available surveys below.

• Baseline Data Book
• Wave 2 (first follow-up) Data Book
• Wave 3 (second follow-up) Data Book

45 and Up Study

The Data Dictionaries provide analysts with information on the structure and coding of the variables that make up the 45 and Up Study datasets.

• 45 and Up Study Baseline Data Dictionary
• 45 and Up Study Wave 2 Data Dictionary (First Follow-Up, 2012-2015)
• 45 and Up Study Wave 3 Data Dictionary (Second Follow-Up, 2018-2020)
• COVID Data Hub Data Dictionary (Excel 150KB)

Medicare Benefits Schedule (MBS) Data Dictionary

The 45 and Up Study receives regular updates of MBS data related to participants. The MBS Data Dictionary provides analysts with information on the structure and coding of the variables that make up Services Australia’s MBS data.

• MBS Data Dictionary  

Pharmaceutical Benefits Scheme (PBS) Data Dictionary

The 45 and Up Study receives regular updates of PBS data related to participants. The PBS Data Dictionary provides analysts with information on the structure and coding of the variables that make up Services Australia’s PBS data.

• PBS Data Dictionary

Chronic Conditions Umbrella Program Linkage (CUPL)

The Data Dictionaries provide analysts with information on the structure and coding of the variables that make up the datasets available through CUPL. See links above for the 45 and Up Study, MBS and PBS Data Dictionaries which are also part of CUPL.

• NSW Admitted Patient Data Collection (APDC)
• NSW Registry of Births, Deaths and Marriages (RBDM-Death) [go to the Data Dictionary Link for ‘NSW Mortality Data’ ]
• NSW Cause of Death Unit Record File (COD-URF) [go to the Data Dictionary Link for ‘NSW Mortality Data’]
• NSW Emergency Department Data Collection (EDDC)
• NSW Central Cancer Registry (NSW CCR)
• NSW Mental Health Ambulatory Data Collection (CHAMB)
• NSW Notifiable Conditions Information Management System (NCIMS)
• NSW Notifiable Conditions Information Management Systems – COVID (NCIMS COVID)

• Technical Note: Update to Q6: Are you of Aboriginal or Torres Strait Islander origin?
• Technical Note: Linked MBS and PBS Data  
• Technical Note on missing or invalid values
• Technical Note: Geocoded Data

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.

For information contact us at 45andUp.research@saxinstitute.org.au.

Before submitting a publication or conference abstract you must send it 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 and the NSW Ministry of Health. We thank the many thousands of people participating in the 45 and Up Study”