Why do we need a registry for patients with stroke?
Registries 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 (AuSCR) will help to:
- ensure that patients affected by stroke receive the best possible care
- improve stroke treatment, care and rehabilitation across Australia
- prevent stroke from occurring
- improve the chances of recovery after stroke
What information is collected?
The AuSCR is a prospective method for collecting important clinical data that is nationally representative. Information collected about the care for patients with stroke or TIA in hospital includes:
- name and date of birth
- ethnic status
- address and telephone number
- contact details of next of kin
- Medicare number
- hospital identification number
- name of the hospital
- type of stroke
- medical treatments received in hospital
- any medical complications
- living arrangements after discharge from hospital
Only a minimal amount of your personal (identifiable) information is collected – enough to ensure that data related to your hospital stay and outcomes can be accurately linked.
Everyone who is registered in the AuSCR (and we have not been notified of their death) will be contacted by mail or phone at approximately 3-6 months after their stroke. At this time, the following information will be collected:
- confirmation of name, date of birth and current address
- current health condition and quality of life
- living arrangements
- whether a subsequent stroke or hospital re-admission occurred following discharge
All information is kept strictly confidential and cannot be used outside the Registry without appropriate approvals. It will not be possible to identify any individual registrants in any reports.
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 AuSCR.
The main benefit of storing details about your stroke or TIA in the AuSCR is that it will contribute to a large database, whereby the information can be used to:
- establish a better understanding of clinical care and health outcomes
- develop programs or policies to improve the quality and safety of stroke care in Australia
- assess changes in clinical practice and health outcomes over time
When contacted for the 3-6 month survey follow-up, all patients and relatives will also have the opportunity to receive an information package from the Stroke Foundation about information resources and community based support services which may assist them further. Patients and relatives can also choose whether they wish to be contacted about participation in future research projects.