FAQs

Successful treatment of cardiovascular disease is dependent upon a highly organised and functional health care system along with skilled clinicians working together across the continuum of care.

A well-coordinated system will provide timely diagnosis of cardiac conditions, transportation to the best level of service, efficient management in the emergency department, a high-level of technical skill from clinicians responsible for restoring blood flow to the heart and effective after care centred on the particular needs of the patient and their family. Inadequacies at any point during this sequence of care may result in poor outcomes for patients and unnecessary additional costs to the health system. The NCR will provide a national picture on the state of cardiac care across of Australia.

Information is managed according to policies and procedures covering privacy, data access, and governance. The NCR complies with State and Commonwealth Privacy Laws and the data collection has been approved by a Human Research Ethics Committee. There are multiple layers of security and protection of individual’s privacy. At the lowest level, NCR will not store personal patient identifiers; instead, there will be a code. The database itself will only be accessible by approved users linked with the State registries and the NCR. Access will be tightly controlled with user verification and multifactor authentication. Data will be stored in accordance with the Australian Commission on Quality & Safety in Health Care’s recommended security standards.

The purpose of the NCR is to document outcome variance and opportunities for excellence in the quality of cardiac health care across Australia. A key method to achieve this is by producing reports. The NCR publishes a comprehensive Annual Status Report which is publicly available. The NCR also provides reports to Participating State and Territory Registries for local benchmarking and quality improvement. Reports will contain aggregate (non-identifiable) data only.

The registry is funded by the Australian Government Department of Health Disability and Ageing. 

Data is submitted to the NCR by participating state and territory registries. The NCR also obtained HREC approval to receive data from hospitals directly, for example private hospitals performing PCI, utilising a Direct Entry Model which is in development. (See Participating Registries fand Data Flow or further details).

Each participating State and Territory registry owns their submitted data.

The data custodian is the NCR entity.

Access to the data is strictly controlled by the NCR Steering Committee. Protocols are in place to ensure that the highest levels of privacy and safety are maintained. All requests for data will need to comply with NCR policies. Researchers and other external groups will be able to apply to the Steering Committee to access aggregate data.

Patients can apply to their participating state/territory registry to access their own data (see Participating Registries). Hospitals and clinicians’ will also be able to access their data via their local participating registries policies and procedures.

The NCR Steering Committee are developing policies and procedures to enable data access for researchers. Researchers wishing to access aggregate (de-identified) data will be to apply to the Steering Committee. Applications will need to be supported by a participating registry by inclusion of a co-investigator. Further details will be provided when this process has been established.

The NCR recognises the unique risks that research poses to Aboriginal and Torres Strait Islander people and communities. Researchers with an interest in Indigenous data will be required to meet NCR standards for ethical use of Indigenous data including the future formation of an Indigenous Expert Advisory Group.

If you represent a PCI hospital and wish to discuss how best to contribute to the NCR, please contact info@nationalcardiacregistry.org.au. We are expanding the reach of the registry with a view to capturing all PCIs performed in Australia each year.