What is a registry?
A registry is a collection of information about people with a specific condition or who have had a specific intervention. By collecting the same information from many people it is possible to compare the results (or outcomes) of the treatment. The information is held in a database.
What information is collected?
ACORN collects information at three different points in time: before your operation; at discharge from your surgical admission; and at six months after your surgery.
The type of information collected includes:
How is my privacy
All information is confidential and cannot be used outside the purposes of the registry. All information is stored securely in a password-protected database. Only approved people involved with the registry have permission to access the information held in the database. Any information stored on paper is kept in locked filing cabinets in a locked office at the Ingham Institute for Applied Medical Research.
How is the information collected used?
information held in the database will be used to compile statistics or
reports in such a way as individuals cannot be identified. An Ethics
Committee must approve the use of the information before it is used for
any other purpose than the registry.
held in the database that identifies individual people can only be
disclosed with that persons’ permission, or except as required by law.
You are able to “opt-out” of participation at anytime. You can opt-out by contacting the Arthroplasty Clinical Outcomes Registry NSW. You may request specific pieces of information about you are removed and become a partial participant, or you may opt-out completely.
It is important that as many people as possible participate in the registry so that the outcomes are able to be applied, in general, to anyone having a hip or knee replacement. Whether you participate or not does not change your treatment in any way.
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