Governance of the CanDLe program

The CanDLe program is more than streamlined access to linked data. It is a new model of collaboration.

The CanDLe program is more than streamlined access to linked data. It is a new model of collaboration aimed to improve the quality and speed of cancer research through the sharing of knowledge, experience, and peer review by a Community of Practice.   

The CanDLe program and governance model has been ethically approved and enables the Cancer Institute NSW to create an enduring data asset that is accessible to approved Lead Researchers and their teams. Data may only be accessed for the purpose of approved sub-study protocols submitted by Lead Researchers.

Overarching Governance Structure for the CanDLe program


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Independent Review Committee

The Independent Review Committee (IRC) is responsible for reviewing the Lead Researcher Expression of Interest submissions and recommending Lead Researchers to the Co-ordinating Principal Investigator for review and approval by the ethics committee. The IRC will also review and resolve any disputes that arise from the Community of Practice.

Community of Practice

CanDLe is dependent on a Community of Practice comprised of Lead Researchers to collaborate, share knowledge and conduct peer review of research sub-study protocols.  The Community of Practice recommends sub-study protocols to the Co-ordinating Principal Investigator for review and approval by the ethics committee. The Community of Practice meets every six weeks.

CanDLe Program Implementation Team

The Cancer Institute NSW CanDLe program implementation team coordinate the CanDLe initiative, working with the partners and stakeholders to ensure the CanDLe data is safely accessed and utilised in accordance with the protocol and governance model.  The team also provide secretariat support to the committees, Community of Practice and forums.

Annual reports

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 protocol they are responsible for by 31 December each year. Please send to: CINSW-CanDLeProgram@health.nsw.gov.au

A final report must be submitted once the project has been completed. All outcomes and planned publications/presentations must be included in this report.