Cancer Data Set Extensions

Population-based cancer registries in each Australian state and jurisdiction provide comprehensive information on cancer incidence. By matching, verifying and registering each case, incidence of each cancer type can be mapped by area of residence, age, sex and country of birth. Death notifications (and cause of death) are also matched and provide the definitive mortality and survival rates for cancer in NSW. More information on the NSW Central Cancer Registry can be found by clicking here.

To enhance this epidemiological information, clinical cancer registries are designed to add the dimensions of stage, treatment and quality of care, allowing analyses of patterns of cancer care against best-practice guidelines. The Institute is funding Area-based clinical cancer registries in six Area Health Services.

By describing cancer stage and actual surgical, radiation and chemotherapeutic interventions, Areas and tumour streams can monitor access and quality of care. However, specific quality of care indicators for each cancer type requires collection of a more specific subset of data items. For instance, for breast cancer the receptor status (oestrogen, progesterone and HER2), together with disease stage dictates the appropriate drug treatment options. Other data items will support better monitoring of supportive care or enhance the prognostic value of the core dataset.

The NSW Oncology Group (NSWOG) was established by the Cancer Institute NSW and comprises cancer specialist doctors and nurses, consumers and patients. The aim of NSWOG includes the identification of best practice care guidelines, and of the data needed to monitor and improve cancer outcomes in NSW. NSWOGs also promote sub specialised training and education for each type of cancer, and clinical trials.

These Data Set Extensions, with the exception of NBCC breast cancer dataset, have been developed by the NSW Oncology Groups and produced by the Cancer Institute NSW to provide a single point of reference for standard for data item definitions, formats and code.

NSW Cancer Minimum Data Set Extensions:

NBCC Breast Cancer Specific Data Item for Clinical Cancer Registration
NSWOG Colorectal Minimum Data Set Extension v1.0 and Guidelines
NSWOG Haematological Cancer Data Set Extension v1.0
NSWOG Lung Cancer Minimum Data Set Extension v1.0 – Draft
NSWOG Upper Gastrointestinal Cancer Minimum Data Set Extension v1.0– Draft
NSWOG Head & Neck Cancer Minimum Data Set Extension v1.0– Draft

To download the documents listed above, please click here.

Any comments should be sent to:

Isa Dinh (Project Officer, Cancer Informatics), tel (02) 8374 5702, or by email: isa.dinh@cancerinstitute.org.au