Ethics and Governance
The Population & Health Services Research Ethics Committee (PHSREC) has reviewed and approved the CanDLE project (2019/ETH12584). The PHSREC Executive must approve all sub-studies prior to their commencement.
Ongoing ethical approval requires the submission of an annual progress report to the ethics committee. Lead researchers must submit an annual progress report to the CanDLe secretariat for each sub-study they are responsible for by 31 December each year.
Please send to CINSW-CandleProgram@health.nsw.gov.au
Please note that any institution/ site governance requirements must be met prior to the commencement of any research by the lead researcher. Please check with your research office for confirmation of any requirements.
All data linkage will be conducted by the Centre for Health Record Linkage and will adhere to strict guidelines that ensure that privacy and security of data is maintained.
Only variables approved by data custodians will be included in CanDLe, and sensitive or personally identifying information will not be included in order to minimise potential confidentiality risks.
Lead Researchers will be responsible for ensuring that research findings are only presented in aggregate form with sufficiently large cell sizes to ensure that no individual can be identified (suppressing cell sizes <5) in peer review publications, conference presentations and the public domain.
Access to Data
CanDLe datasets will be stored and accessible in the SURE platform, which will enable appropriate monitoring and control of data access and use. The Cancer Institute NSW is responsible for managing the master dataset, and for allocating access to Lead Researchers via Project Folders specific to each approved sub-study.
All Lead Researchers must sign a confidentiality undertaking prior to having access to datasets.