Read aloud

Access to NDSS data for organisations and researchers

Organisations and researchers may request access to NDSS data for either of the two following purposes:

  • contacting people registered with the NDSS who have given consent to be invited to participate in research studies
  • access to de-identified data collected by the NDSS.

If you are interested in contacting people registered with the NDSS or obtaining data for research purposes, please read our External requests to access NDSS data policy.

This policy details background information:

  • about NDSS data
  • types of requests
  • how requests are assessed
  • the process for requesting NDSS data
  • charges for providing data.

Enquiries

To discuss options for requests or to lodge a request, please email your request to . Alternatively, you can call the  Privacy Officer on 02 6232 3800 to discuss your request.

Applications

Before proceeding, please read our External requests to access NDSS data policy.

Where the study involves communication with people registered with the NDSS

To apply to contact people registered with the NDSS:

Diabetes Australia will assess the application to determine whether we are able to approve the application to facilitate contact with people registered with the NDSS as requested and respond to the applicant accordingly.

With the current Coronavirus (COVID-19) pandemic the Department of Health has advised that all research requests to contact people registered with the National Diabetes Services Scheme (NDSS) are postponed until further notice.

This is to enable people with diabetes to concentrate on how to best manage their diabetes and not overwhelm them with additional information in these uncertain times.

Should organisations and researchers deem there to be exceptional reasons to proceed with a research request, further information to support the need to continue will need to be submitted. These will be reviewed on a case-by-case basis by the Department of Health.

Where the study involves access to NDSS data

To apply for access to NDSS data:

Diabetes Australia will assess the application to determine whether we are able to provide the requested data and respond to the applicant accordingly.