Accessing AuSCR Data for Research

If you are a researcher seeking to use Australian Stroke Clinical Registry (AuSCR) data, you are required to contact the AuSCR Office for advice in the initial design phase of your project, to ensure that the data are suitable for your project’s purposes.  Only archived, clean, de-identified data will be made accessible to external researchers, and only the variables requested to answer the approved research questions will be provided.

Researchers seeking to use the AuSCR to recruit participants for a research project can apply for the AuSCR Office to contact potential registrants on their behalf.  Only those registrants who have indicated during follow-up data collection (90 to 180 days following admission) that they would be willing to be contacted for future research, and who have not been identified as deceased through linkage with the National Death Index, will be contacted.  Registrant contact details will not be released to researchers.

After a research project has been approved by the relevant Human Research Ethics Committee(s), the application for use of AuSCR data in your project can commence.

Obtaining a quote

Please download the AuSCR data request form by clicking here.  Complete this form and email it to the AuSCR Office.

The AuSCR National Coordinator will contact you about this proposal and provide you with an estimate of the costs involved.  Costs will vary according to the amount of data requested (e.g. for data linkage studies), and whether you wish to use the AuSCR to recruit participants for your study.

Please allow 10 working days for a quote to be finalised.

Independent review

Once you receive the quote and decide to proceed with the application, the AuSCR National Coordinator will provide you with the application forms, including:

  • data access checklist
  • project application form
  • confidentiality agreement

You will also need to provide copies of your Human Research Ethics Committee approval(s), the approved project protocol and any other relevant documents such as patient information sheets/consent forms.  This paperwork is required for the process of independent review.

The project documentation will be sent to two independent reviewers from the AuSCR Research Task Group, before a final review and approval by the Chair of the Research Task Group.  As part of this review process, you may be asked for additional information or clarification.

The review and approval process will take approximately 8 to 12 weeks to be completed.

Following approval, the AuSCR National Coordinator will liaise with you about the mechanisms for data provision and/or participant recruitment.