Information for researchers

Linkage studies

The Sax Institute will maintain data for the cohort from Medicare Australia, including MBS and PBS. The Sax Institute will negotiate approval with Medicare Australia to provide these data to a third party. Linking data from Medicare Australia with questionnaire data from the Study cohort will be undertaken by the 45 and Up Study team and then provided to researchers and policy makers.

Other linked health data can be obtained via the NSW Centre for Health Record Linkage (CHeReL). The 45 and Up Study team will assist with negotiations for these data. The 45 and Up Study is included in the Master Linkage Key for the CHeReL. This will facilitate linkage between participant questionnaire data and data from a range of other sources including:

  • NSW Admitted Patient Data Collection
  • NSW Emergency Department Data Collection
  • NSW Midwives Data Collection
  • NSW Perinatal Death Review Database
  • NSW Central Cancer Registry
  • NSW Pap Test Register
  • NSW Registry of Births, Deaths and Marriages birth registration data
  • NSW Registry of Births, Death and Marriages death registration data
  • ABS Mortality Data
  • ABS Perinatal Mortality Data

Request process:

Requests for linkage studies are made by submitting an ‘Application to use linked and/or sub-study data’.  To download an application form click here.

A Stage 1 application should be submitted for projects where there are plans to seek competitive funding for the project and at this stage the researcher(s) are requesting preliminary review and ‘in principle agreement’ from the 45 and Up Study Scientific Advisory Committee.

A Stage 2 application should be submitted for projects that already have funding and the researchers are requesting full review and approval to undertake a project using data from the 45 and Up Study.

The ‘Application to use linked and/or sub-study data’ is for both Stage 1 and Stage 2 applications. More detail is required for Stage 2 applications. When researchers are ready to submit a Stage 2 application they can add this detail to the Stage 1 application they have already submitted.

Approval process:

Applications are reviewed by the Study team (the Scientific Director of the 45 and Up Study and the Sax Institute Research Director), the Chair of the Scientific Advisory Committee plus one member of the Scientific Advisory Committee out of session. Where members of the Study team and / or the Chair of the Scientific Advisory Committee have a potential conflict of interest the application will be reviewed by the Study team or the Chair of the Scientific Advisory Committee plus two members of the Scientific Advisory Committee out of session. Any uncertainty / differences in recommendations that can not be resolved by the Study team and the Chair of the Scientific Advisory Committee will be reviewed at the next face-to-face meeting of the Scientific Advisory Committee (see here for meeting dates). Applications where a resubmission has been requested or where the Study team recommend rejecting access will be reviewed by the full Scientific Advisory Committee. Outcomes of the review will be communicated to applicants within 28 days.

Access requirements:

A ‘Confidentiality and data use agreement for linkage and sub-studies’* must be signed by a representative of the organisation receiving the data.

An ‘Individual confidentiality undertaking for use of data from the 45 and Up Study’ must also be signed by all individuals who will have access to the data. To download a PDF of this document click here. 

Charges (excl GST):

Charges for linkage studies are calculated per data set (from $5,000 per data set) plus an amount as contribution to support sustainability of the 45 and Up Study starting from $40,000 per project. A quote will be provided.

*These forms are currently under review and will be made available shortly