Data Governance

Proposals involving access to data held or managed by the either the Cancer Institute NSW, including the Central Cancer Registry, the Pap Test Registry, Breast Screen NSW, or the Cervical Screening Program, or the NSW Department of Health must be review by the relevant Data Custodian PRIOR to submission to the Ethics Committee.

Researchers are required to completed a data request form and submit this to the relevant Data Custodian for review.

Researchers are reminded that the Data Custodian is required to sign off on all requests for data from registries owned or managed by NSW Health or the Cancer Institute NSW. The Data Custodian Sign Off form must be included with the application form.

The Ethics Committee will not review research proposals unless researchers have contacted the relevant Data Custodian, and an assessment of data governance issues has been commenced. For further information about this process, please refer to the Cancer Institute NSW Data Governance policy.

Whilst the Ethics Committee will determine the ethical acceptability of such proposals, the authority to release data lies with the Data Custodian of the particular data collection, and Director-General of NSW Health or his/her delegate for individually identified data.