Who can access the data?
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 in the future.
How can I access my data?
Patients can apply to their participating state/territory registry to access their own data (see Participating Registries). Hospitals and clinicians’ can access their data via their local participating registries policies and procedures.
How can I access the data for research purposes?
The NCR Steering Committee is developing policies and procedures to enable data access for researchers. Researchers wishing to access aggregate (de-identified) data will be able to apply to the Steering Committee in the future. 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.
What about Aboriginal and Torres Strait Islander data?
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. Further details will be provided when this process has been established.