Information for researchers
How do I join the CanDLe initiative?
There will be two Expression of Interest rounds in the initial year, where researchers can apply to be a Lead Researcher on the CanDle initiative.
CanDLe Lead Researcher Expression of Interest (round 3)
13th September 2021
15th October 2021
Expression of Interest for Lead Researcher
Research group leaders who would like to participate in the CanDle initiative as a Lead Researcher will be required to complete an Expression of Interest (DOC) demonstrating that they meet the selection criteria, the CanDle Controller Nomination Form (DOC) and an endorsement letter (DOC) from the applicants institution. The application must be emailed to CINSW-CandleProgram@health.nsw.gov.au before 1pm on the closing date. Applications will be reviewed by an Independent Review Committee who provide recommendations to PHSREC for approval.
- Expertise in analysing and interpreting linked health data (preferentially in cancer research), including a proven track record and high levels of research productivity, and;
- Experience or training handling potentially sensitive personal information or re-identifiable data, and;
- Endorsement of the Expression of Interest application by the applicant's Institution.
Lead Researcher responsibilities
- Responsible for the oversight and management of all approved sub-studies of their research group. This includes (but is not limited to) fulfilling any local site governance requirements, and ensuring that only nominated group members have access to datasets.
- Participate and contribute to the CanDLe Community of Practice
- Triage and submit Sub-Study Protocols to the Community of Practice on behalf of their research group.
- Ensure all participating members of research group agree to conditions of data use agreement and have completed the relevant mandatory training prior to accessing data.
- Act as or oversee the approved controller for their research groups’ SURE or equivalent secure data storage workspace.
CanDLe Community of Practice
CanDLe is dependent on a Community of Practice comprised of Lead Researchers from NSW Institutions and the Independent Review Committee to collaborate, share knowledge and conduct peer review of research sub-studies. They will recommend sub-studies for review and approval by the Population Health Services Research Ethics Committee (PHSREC) Executive. It is anticipated the Community of Practice (CoP) will meet every 6 weeks.
Process for researchers to analyse the data for a sub-study.
- Researcher designs the sub-study in consultation with relevant expertise and completes the CanDLe sub-study protocol.
- The Lead Researcher is responsible for reviewing all sub-study protocols from their research group and submits it to the Community of Practice via the CanDLe secretariat CINSW-CandleProgram@health.nsw.gov.au
- The Community of Practice review the sub-study protocol and either provide feedback to the Lead Researcher, or recommend that the sub-study protocol is submitted to PHSREC via the CanDLe secretariat.
- Once a sub-study receives ethical approval, the Lead Researcher will be informed and the study analysis can commence. Access to datasets will be organised after ethics approval has been granted.
Variable lists and data dictionaries
The CanDLe datasets include over 200 listed variables (XLS).
For further details on the variables please see the data dictionaries for each dataset below:
- NSW Admitted Patient Data Collection (APDC)
- NSW Emergency Department Data Collection (EDDC)
- NSW Registry of Births, Deaths and Marriages Death Registrations (RBDM) and Australian Coordinating Registry Cause of Death Unit Record File (COD URF)
- NSW Cancer Registry
- NSW Pap Test Register
- BreastScreen NSW