The Australian Stroke Clinical Registry (AuSCR) is the first, nationwide registry that records information on patients with a stroke or transient ischaemic attack (TIA, or ‘mini-stroke’). Stroke affects more than 50,000 people in Australia every year. By determining the patterns of treatments and health care, we aim to guide and monitor improvements in the quality of stroke care. We also aim to enable future stroke research.
Fundamental to this purpose is the registration of all stroke cases admitted to participating hospitals. We have completed the pilot phase, with six hospitals participating in 2009. The aim is for every hospital in Australia, public and private, rural and metropolitan, to be involved in AuSCR. In 2010 we commenced roll-out to all interested hospitals across the country. The number of participating hospitals is increasing. See Participating Hospitals
AuSCR uses a highly secure internet connection to protect against the loss, misuse and alteration of data received. Data security for the AuSCR website includes encryption of data and access to the system only after authentication is provided.
Participating hospitals have access to online tools for statistical analysis and a reporting package for presentations, and will be able to analyse and compare their data with national data. An annual report with aggregated and de-identified data will be produced by AuSCR for general circulation annually. See latest Annual Report
The data management and quality assurance processes include documentation; audit trails; approved changes to the register or data tables; routine quality assurance practices and reporting; in-house statistical analyses of group data for annual reports; and data backup procedures.
Three months after the first stroke episode, consenting patients are contacted by mail to determine their recovery levels and outcomes. Follow-up is conducted centrally and independently of the participating hospitals.
The Florey Institute of Neuroscience and Mental Health is the current data custodian. Third parties who wish to use Registry data must seek approval from the AuSCR Steering Committee prior to publishing any findings. Dependent on the use of AuSCR data, it may also be necessary to obtain relevant Ethics Committee endorsement.
AuSCR was developed according to the ‘Operating Principles and Technical Standards for Australian Quality Clinical Registries’ in 2009.
The pilot evaluation feedback received from the Australian Commission on Safety and Quality in Health Care verifies our compliance with the operating and technical standards of a Level 2 register.