ACOR Ltd is a not-for-profit organisation. It has a small administrative team in Sydney that manages the business side of the organisation. The real work of ACOR is done by highly regarded, widely respected and expert cardiac clinicians and academics who work daily in hospitals, clinics, universities and research units across Australia and New Zealand, and who have devoted their professional lives to improving the quality of life of people with cardiac diseases. They give their time and expertise to ACOR on a voluntary basis.
The need for a registry in any specific area of cardiac health can be initiated by any interested party in any location within Australia and/or New Zealand. They can then approach ACOR Ltd to establish and run a national registry on their behalf, in that specific cardiac health area. For example, the national Cardiac Devices Registry was initiated – and funded – by the Australian Commonwealth Department of Health, such was their concern for monitoring the quality of life of people who had had devices such as pacemakers, stents and heart valves inserted as part of their treatment. Each cardiac registry under ACOR’s national umbrella is managed by a Steering Committee; each Steering Committee is chaired by a prominent clinician with a particular interest and reputation in that specific area of cardiac disease. Steering Committee members are then drawn by invitation from high profile clinical and academic experts in that area. Relevant funding bodies have observer status on Committees; consumer groups are represented (such as the National Heart Foundation), and other stakeholders are included as required. Steering Committees meet regularly; in turn, each Steering Committee Chairperson is required to report to the Board of ACOR Ltd, identifying progress against timelines and budgets, and any potential risks.
Data from consenting cardiac patients is entered into a sophisticated database by specially-trained staff on site at the participating hospitals and clinics, using leading-edge communications technology. The database is located in Adelaide and is managed under contract with ACOR by expert staff of the South Australian Health and Medical Research Institute (SAHMRI). It is SAHMRI staff who liaise directly with data managers, and SAHMRI that analyses the data for ACOR and produces feedback and reports, which can then be used by clinicians and academics for the purpose of continuous improvement of teaching and practice. Individual hospitals and clinics can use the national results to benchmark their own performance against the rest of the region.
