National Stroke Data Linkage Interest Group


This page provides information about the National Stroke Data Linkage Group. It includes:

The role of Data Linkage group

Terms of reference

Aims of group

  • Seek advice from members on the ethics and data custodians processes for the data acquisition linkage of the AuSCR with externally held datasets
  • Collaborate and seek a thorough understanding from members of the data transfer and linkage processes required to link AuSCR data to various external datasets held by state and commonwealth governments including:
    • hospital administrative data (admissions and emergency presentations)
    • death registry data (National Death Index)
    • prescription data (pharmaceutical benefits scheme)
    • medical visits (medical benefits scheme)
  • Share knowledge on data coding, statistical techniques for the preparation of datasets and for the analyses of linked data
  • Collaborate on the writing of grants to access data to understand the continuum of stroke from prevention to quality of care and long term outcomes
  • Explore future linkage possibilities for the AuSCR including the Patient experience databases

A brief history of the Stroke Data Linkage group

The Data Linkage Sub-committee was established as part of Stroke123, a 4 year Better Health Initiative Partnership Grant (NHMRC). This was a complex study with numerous partner organisations and collaborators. To facilitate the coordination and running of the project various sub-committees were established including the Data Linkage Sub-Committee.

In 2018 this Sub-committee was renamed the National Stroke Data Linkage Interest group to identify the transition from Stroke123 to more generic National Stroke data linkage projects. The oversight and governance of this Committee will be the Australian Stroke Clinical Registry (AuSCR) Steering Committee.

Links to the membership of group

Dr Monique Kilkenny                                   

Vijaya Sundararajan                           
Dominique Cadilhac                                 

Current members: