Why do we need a register for stroke patients?
Registers are increasingly recognised as one of the most important approaches to monitoring and improving the healthcare provided to the Australian population. By collecting information about your hospital stay, the Australian Stroke Clinical Registry will:
What information is collected?
The Australian Stroke Clinical Registry (AuSCR) is a prospective method for collecting important stroke patient data that is nationally representative. Information collected in hospital includes:
Only a minimal amount of your personal (identifiable) information is collected to ensure that data related to your hospital stay, subsequent rehabilitation, follow-up and outcomes can be accurately linked.
As a participant of the Australian Stroke Clinical Registry, everyone who is registered will be contacted by telephone or mail at approximately 3-6 months after their stroke. At this time the following information will be collected:
All information is kept strictly confidential and cannot be used outside the Australian Stroke Clinical Registry without your permission and separate ethics approval.
What are the risks and benefits to me and my family?
There are no risks to your health by having your details stored in the Australian Stroke Clinical Registry.
The main benefit of storing details about your stroke in the Australian Stroke Clinical Registry is that it will contribute to a large database will lead to a) a better understanding of clinical care and health outcomes; b) the development of interventions and policies to improve the quality and safety of stroke care delivery in Australia; and c) the assessment of changes in clinical practice and health outcomes over time. In the future, the Australian Stroke Clinical Registry may also provide a framework for other research.
After discharge, and when contacted for the 3-6 month follow-up all patients and relatives will have the opportunity to speak with a representative of the National Stroke Foundation about their current situation and seek information about community based stroke services which may be able to assist them further.