The Registry: A Pan-Canadian, Multi-Center Surveillance Research Collaboration

Brain tumours, whether malignant or non-malignant, can significantly impact the lives of those diagnosed, affecting their health and overall quality of life. It is estimated that 27 Canadians are diagnosed with a brain tumour every day and, until recently, the data available did not reflect the extent and complexity of brain tumour cases in Canada. The Brain Tumour Foundation of Canada identified a gap in available information on Canadian brain tumour patients and prioritized the development of a pan-Canadian surveillance report.

In 2015, Dr. Faith Davis of the University of Alberta received a Brain Canada Platform Support Grant, in partnership with the Brain Tumour Foundation of Canada, to build upon Canada’s existing cancer registry data.

The Brain Tumour Registry of Canada (BTRC) is a pan-Canadian, multi-center surveillance research collaboration with the goal of providing comprehensive data on the incidence, prevalence, and survival rates of both malignant and non-malignant brain tumours. The research team includes cancer epidemiologists and clinician scientists, along with counterpart provincial and territory cancer registry experts. While the existing provincial and territorial cancer registries collect the data, Dr. Davis and her colleagues provide quality control and analysis of the data and prepare reports to make that information available to the research community.

The official launch of the Brain Tumour Registry of Canada in May 2019 was accompanied by their first Incidence Report, which includes data collected from four provinces (BC, AB, MB, and ON) between 2010 and 2015. The report included information on patient characteristics, such as sex, age, location, and tumour histology, which can be used to explore trends in incidence and prevalence. This information, in turn, can stimulate hypotheses on the causes of various types of brain tumours and potential treatments to improve health outcomes, as well as support clinical and policy guideline formation. A Survival Report, published shortly after in December 2019, included survival rates which are critical in informing clinical decision-making, support planning for research, as well as policy development. Significantly, the report included data on non-malignant tumours and is the first of its kind in Canada. The team’s next report, expected in late 2020, will include data from all provinces and territories.

With funding from Brain Canada, we have enhanced brain tumour surveillance in Canada and made crucial population-level data available for clinicians, researchers, policymakers, and patient advocates for the first time in Canada. Through this project, we have also laid the foundation for ongoing comprehensive surveillance and reporting through a collaboration between the Public Health Agency of Canada, Brain Tumour Foundation of Canada and the University of Alberta,” said Dr. Faith Davis.