FAQ

Frequently Asked Questions: General

What is the Australian Stroke Clinical Registry about?

The Registry collects information about what happens to people who have had a stroke or mini-stroke, called a transient ischaemic attack (TIA). We collect information from hospitals and patients to find out about the care you received in hospital and how well patients recovered after a stroke.

Why are you collecting this information?

The Australian Stroke Clinical Registry aims to ensure that patients and their families affected by stroke receive the best possible care. The data are used by health planners and doctors to improve stroke care, rehabilitation and treatment so that the best chances of recovery after stroke are possible.

Will the information be kept private/confidential?

Yes, all personal information is kept strictly confidential and cannot be used outside the Australian Stroke Clinical Registry. The information is stored in a specially designed password protected database which can only be accessed by a small number of approved Australian Stroke Clinical Registry staff. The names of individuals and hospitals are not identified in any reports or publications produced or sold to other organizations.

How will the information be used?

The Australian Stroke Clinical Registry will produce reports on factors that influence the success of stroke care and rehabilitation using summary information from all cases registered. Hospitals participating in the Registry will have access to their own information and for their own reporting and quality assurance processes. Some reports may be presented at conferences or submitted for publication in medical journal. All information is protected and de- identified by law.

Who is the Australian Stroke Clinical Registry funded by?

Australian Stroke Clinical Registry has received initial establishment funding from the Australian Commission on Safety and Quality in Health Care and an unrestricted educational grant from Allergan Australia. The National Stroke Foundation and Stroke Society of Australasia also provide support. On-going funding is currently being sought.

If you have any further questions please do not hesitate to contact the AuSCR Office.

 

Frequently Asked Questions: For Patients and Relatives

Why should I participate in the Australian Stroke Clinical Registry?

Stroke affects more than 50,000 people in Australia every year. It is important that as many people as possible take part in Australian Stroke Clinical Registry so as to allow us to monitor and guide improvements in the quality of stroke care in Australia.

There are no risks to your health by having your details stored in Australian Stroke Clinical Registry. Being involved in Australian Stroke Clinical Registry will not affect the way your treating doctors and stroke team approach your treatment or long-term care.

What are the benefits of the Australian Stroke Clinical Registry to me and the community?

By determining the patterns of treatments and stroke care, from the information collected across the nation the objective is to:

➤ensure that patients and their families affected by stroke receive the best possible care;

➤improve stroke care and rehabilitation;

➤improve treatment for stroke in hospitals;

➤ensure that stroke can be better prevented from occurring; and

➤improve the chances of recovery from stroke

The Australian Stroke Clinical Registry will also enable future stroke research, thus furthering medical knowledge and improving stroke patient care.

How did you get my information?

Your information was provided by your treating doctor at the hospital you were admitted to when you had a stroke. The hospital should have provided you with an information sheet during your admission explaining that they would provide us with details about your stroke as well as your contact details.

How will my information be used?

The information collected in the Registry will be used to improve the quality of stroke care. This is possible because the Registry collects information about factors that influence the success of stroke care and rehabilitation, and the Management Committee then reports performance on these factors back to each hospital.

Your  information may be provided in the form of anonymous reports that can be accessed from this web site.  In addition,  reports may be presented at conferences or submitted for publication in medical journals. Only aggregate information is provided via the reports, no personal or identifiable information is included in these reports. In addition to these hospital reports, the Register will compile and publicise an Annual Report every year. This report will contain aggregate information about people with stroke, no personal or identifiable information is included in these reports.

We may also use personal information to reply to inquiries, handle complaints and to remove duplicate entries from the Register. Personal information will remain confidential unless:  You provide us with written or electronic consent to release your information for the purposes of a specific research project, or we are required by law to make the disclosure.

All reports will use de-identified data and it will not be possible to identify any individuals in any reports.

How do I know that my information is kept safe and not used without permission?

The Australian Stroke Clinical Registry is committed to safeguarding your privacy online.

We are committed to protecting your privacy and the security of all information that is shared with the Registry. To ensure security, the Registry uses a highly secure internet connection (known as Secure Sockets Layer) to protect against the loss, misuse, and alteration of any information we receive from you.  Popular browsers such as Netscape Navigator and Microsoft Internet Explorer will alert you when information is being protected by SSL.

The Florey Institute of Neuroscience and Mental Health is the Data Custodian of the Australian Stroke Clinical Registry, and is responsible for data security. For more information please see our Data Security Policy

To maintain absolute security and confidentiality anyone wanting to use any of the information stored in the Australian Stroke Clinical Registry will be required to obtain ethics approval from an Australianl Research Ethics Committee.

If you have any further questions please do not hesitate to contact the AuSCR Office.