Who owns the data submitted to the NCR?
Each participating registry.
Who is the NCR data custodian?
The data custodian is NCR Ltd.
Who governs the NCR?
The operations of the National NCR is managed by a team at Monash University within the Centre of Cardiovascular Research and Education in Therapeutics (CCRET), part of the Public Health and Preventive Medicine. Clinical oversight, policy guidance and registry support is provided to the operational team by the NCR Steering Committee. The NCR Steering Committee utilises a federated model with representation from all Australian states and territories, the Australian Government Department of Health, consumers, and Indigenous Peoples.
The NCR Board is responsible for the legal governance, monitoring and managing aspects of the company’s business, affairs and operations. Like the Steering Committee, it utilises a federated model with representation from each state and territory in addition to the two peak cardiac societies – The Cardiac Society of Australia and New Zealand, Australian and New Zealand Society of Cardiac and Thoracic Surgeons.
Data collection is managed by participating registries which cover each Australian state and territory. Participating registries must have appropriate authorisation in place (e.g. approval from ethics committees, legislation, data sharing agreements) to collect and submit data to NCR. NCR has ethics approval and data sharing agreements in place to receive this data.This registry will be carried out according to the National Statement on Ethical Conduct in Human Research (2018). This statement has been developed to protect the interests of people who agree to participate in research.