What is CanDLe?
Enduring Cancer Data Linkage (CanDLe) for health services research in New South Wales is a Cancer Institute NSW initiative that will provide linked unit record cancer data to a network of approved researchers, aiming to advance the pace, quantity and quality of population-wide cancer research that is aligned to the goals of the NSW Cancer Plan.
The initiative has been designed to safely provide faster access to linked cancer data and follows the Five Safes framework. Through its emphasis on researcher collaboration, CanDLe serves as an infrastructure to facilitate high quality population health research in NSW. The CanDLe project has been approved by the NSW Population & Health Research Ethics Committee (PHSREC).
Collaboration to increase our understanding of cancer in NSW
Collaboration between the researchers who participate in CanDLe aspires to increase our understanding of cancer in NSW. All research studies that are undertaken will be listed on this website, will align with the cancer plan and are expected to focus on areas such as:
- the identification of risk factors for cancer;
- patterns of care for individuals with cancer;
- health service utilisation;
- impact of screening on health outcomes ;
- heath impacts for cancer survivors.
This evidence will help inform decision making on cancer care in NSW.
What data will be available?
The CanDLe project has been ethically approved and enables the Cancer Institute NSW to create 2 linked datasets (CanDLe 1 and CanDLe 2 Women Screen), based on two cohorts:
- A primary cohort of people diagnosed with or treated for cancer in NSW from the NSW Cancer Registry and a subset of the NSW Admitted Patient Data Collection (APDC) with a malignant condition in the diagnosis code. (CanDLe 1).
- All women in NSW who were invited to participate in either breast or cervical cancer screening and all women who were diagnosed with or treated for cancer in NSW from the NSW Cancer Registry and all women in a subset of the NSW Admitted Patient Data Collection (APDC) with a malignant condition in the diagnosis code. (CanDLe 2 Women Screen).
The population health and administrative data collections that are included are shown below. You can also view approved variables from these data collections.
Data linkage and storage
The data will be linked by the Centre for Health Record Linkage (CHeReL) to protect privacy. The current PHSREC approval is that datasets are stored and accessed safely in the Secure Unified Research Environment (SURE).
Who will have access to the data?
Researchers from NSW Institutions can apply to be a Lead Researcher through one of the Expression of Interest rounds. Lead Researchers are responsible for their research groups’ use of the data and will participate in the community of practice to collaborate and peer review other research study proposals. Lead Researchers must meet the eligibility requirements, be recommended by the Independent Review Committee, and approved by the PHSREC.
Researchers will be added as investigators to the approved CanDLe project and will be granted access to the data when they have fulfilled the data access requirements.
Sub-studies proposed by members of the Lead Researchers research group will require recommendation by the Community of Practice and approval by the PHSREC before gaining access to the data. PhD students and early career researchers are welcome to collaborate with Lead Researchers on sub-studies so long as appropriate supervision is provided
Please contact the CanDLe Secretariat for any further information at CINSW-CandleProgram@health.nsw.gov.au
Frequently Asked Questions
Who are Key Research Group members? (as noted on the Lead Researcher Expression of Interest application form)
Members of the research group that are anticipated to be involved in the majority of sub-studies conducted. A Key Research Group member may or may not require access to the datasets. For example, an experienced clinician may assist in the development, planning and interpretation of a sub-study, but not require access to datasets. A biostatistician would likely assist in the development of the protocol and require access to datasets.
If a Key Research Group member is listed on the Lead Researcher EOI application form as requiring access to data, do they need to be noted on the Project Specific Protocol also?
Yes. SURE user accounts are developed from the Sub-Study Protocol, not the EOI application. All researchers requiring access to datasets must be listed on the Sub-Study Protocol.
Who do I inform if a Key Research Group member leaves or is appointed after the lead researcher EOI form has been submitted?
Changes in membership of the research group should be notified to the CanDLe team in the annual progress report which is due 31 December.
Is there a limit to how many sub-studies can be active in one research group simultaneously?
There is no limit to the number of active sub-studies within one research group. However, there is a limit to the number of users who can access the SURE platform simultaneously. It is the decision of the Lead Researcher as to how many sub-studies are submitted for approval and are active at any one time.
Will all those listed on a sub-study protocol have access to data?
Only those who have been nominated as requiring access to the CanDLe datasets on the Sub-Study Protocol will have access to the unit record data. Approval for data access user log-ins will be based on the approved sub-study protocol.
Do you have to be listed on a sub-study protocol to be involved on a sub study?
A person may be involved with the project without requiring access to the datasets provided the participating institutions policies are followed.
How long can a sub-study run for?
It is the decision of the Lead Researcher and research group as to how long a sub-study will run. However, access to SURE is dependent on an annual payment. Therefore, if a sub-study is projected to take more than one year to complete, the lead researcher must ensure that there is funding available to cover the costs of accessing SURE for this timeframe.
Additionally, progress reporting to the PHSREC is a condition of on-going approval. A Lead Researcher must submit an annual progress report to the CanDLe secretariat at CINSW-CandleProgram@health.nsw.gov.au by 31 December each year. The secretariat will submit to the PHSREC on the lead researchers behalf.
What are the definitions of researcher categories as noted on the sub-study protocol document?
Established Researcher: A researcher with at least five years’ experience.
Early Career Researcher: A researcher with no more than five years’ experience.
PhD Student: A researcher who is currently enrolled in a PhD and this project will contribute to it.
Master Student: A researcher who is currently enrolled in a Masters and this project will contribute to it.
Other Student: A researcher who is currently enrolled in another program such as Honours and this project will contribute to it.
If a researcher is named on multiple sub-studies, do they receive multiple SURE user log-in details?
No. A researcher will only use 1 log-in across multiple projects.
How do I submit progress and final reports for my sub-study?
Progress reports are available online, and are to be submitted to CINSW-CandleProgram@health.nsw.gov.au. Progress reports must be completed annually for each sub-study, and submitted by 31 December each year. A final report must be submitted once the project has been completed. All outcomes and planned publications/ presentations must be included in this report.
Will details of my sub-study be online?
Yes, a lay summary of the projects that your research group wish to investigate will be available on the Cancer Institute NSW website. This summary is taken from the Lead Researcher EOI application form.
Case studies and research outcomes will also be published on the website on a regular basis with the permission of the lead researcher.