Ten years of the australian stroke clinical registry: How the data have been used to inform policy and practice.

Abstract

Objectives: To describe the establishment and progress with the Australian Stroke Clinical Registry (AuSCR) since it was established in 2009 using the recommended technical and operational standards for Australia. The main purpose of AuSCR is to provide a standardized approach to monitoring stroke care and outcomes, and provide the evidence needed for improvements to the quality of care in hospital for people with stroke or transient ischaemic attack (TIA). A secondary objective is to facilitate research. Method(s): Consecutive patients are included in the registry with a confirmed stroke or TIA (admissions only) from participating hospitals. To reduce bias, an opt-out consent process is used and a waiver of consent for people who die in hospital. At 90-180 days post admission, eligible registrants not known to have died are posted a survey to determine their patient-reported outcomes. These registrants are also asked whether they would like to be contacted for further research. Result(s): Currently, 62 acute care public hospitals contribute data from various regions of Australia with over 118,000 episodes of care recorded. Follow-up surveys have been completed on over 56,000 registrants (annual response rate between 65% to 71%), with survival status updated each year via linkage with national death records. Our data linkage program has enabled enrichment of the minimum dataset to provide greater detail before, during and after stroke, including survival status, use of medications and readmissions to hospital. Over 10 cohort studies or clinical trials have been facilitated through having access to our register of patients willing to be contacted for research studies. Conclusion(s): It takes several years to establish a registry and it requires a committed partnership between clinicians, quality improvement scientists, epidemiologists and policy makers/funders. Provision of data and benchmarked reports directly back to hospitals is essential including patient-reported outcomes.