Cardiovascular disease (CVD) is currently the leading cause of death in Australia and New Zealand. Cardiovascular disease kills one Australian every 12 minutes, and one New Zealander every 90 minutes. The health and economic burden of cardiovascular disease continues to outweigh that of any other health condition in these two countries.
Cardiovascular disease includes all disease and conditions of the heart and blood vessels. The main types of CVD are:
- coronary heart disease
- stroke (CVA or cerebrovascular accident)
- heart failure and cardiomyopathy
- rheumatic heart disease
- peripheral vascular disease (PVD)
- congenital heart disease
One way to improve the current state of CVD in Australia and New Zealand is through the development of a national registry of cardiac patient outcomes, to continuously monitor the outcomes of treatment provided to cardiac patients and progressively improve their treatment and management.
What is a Patient Outcomes Registry?
A Patient Outcomes Registry aims to improve the safety or quality of health care provided to patients. Detailed health-related information about patients is entered into a database; this information is then used to assess outcomes of care provision, and guide quality improvements.
What is ACOR?
ACOR was established in 2012 to develop registries of cardiac patient outcomes at a national level for Australia and New Zealand. ACOR collects data on cardiac procedures, recording national practice and imparting that information back to participating hospitals and clinicians. The data is analysed to improve cardiac procedures and therapies.
As a patient, if you consent to participate in one of our registries, relevant information about you, your health, medical history and your cardiac procedure will be stored in our database and will be used to monitor your treatment outcomes and track complications.
ACOR produces general reports on outcomes for the public, government, clinicians, academics and professional organisations. These reports aim to outline current trends and identify possible gaps in cardiac health care. No publication or report will ever contain identifying patient information.
What information do we collect?
ACOR collects information about you and your health before, during and after your procedure. This may include the following:
- Hospital UR Number
- Date of Birth
- Medicare or Department of Veterans Affairs Number
- Contact information (mailing address, phone number)
- Date of admission
- Name of hospital
- Admission type (public or private)
- Patient history
- Details about the procedure
- Complications (if any)
- Discharge information
- Health information after discharge
Information is taken from hospital records and entered securely into the ACOR database by a hospital staff member.
Participation, Consent and Privacy
ACOR Registries require collection of certain patient identifying information, and this information is regarded as sensitive. ACOR complies with all relevant Commonwealth, State and Territory legislation and regulations, specifically the Privacy Act (1988) and the Operating Principles and Technical Standards for Australian Clinical Quality Registries Guidelines. ACOR’s compliance is assessed by an Australian Human Research Ethics Committee (HREC) review. HREC is responsible for resolving any privacy complaints made by individuals. Privacy and confidentiality measures affecting all types of Registry data handling includes data input, access, output, and also database linkages.
Participation in ACOR is voluntary and you can opt out at any time.
If you choose to opt out please contact the Registry Operator on 1800 290 571 or email at email@example.com.
Please discuss any concerns regarding the Registry with your doctor or health care professional.