The goal of the Brain Tumour Registry of Canada is to make every brain tumour count, collecting and presenting comprehensive data on the incidence, prevalence, and survival rates for all primary malignant and non-malignant brain tumours. These data have the potential to shape advancements in researching the cause of and cure for brain tumours.
Incidence and Mortality
Brain tumours affect approximately 50,000 Canadians each year, with an estimated 27 new diagnoses each day. The Brain Tumour Registry of Canada has estimated the rate of new diagnoses. The report breaks down tumour incidence according to several factors like age, sex, region and histology. Additionally, the rate of mortality from brain tumours has been estimated for all of Canada.
In early 2020, the first Brain Tumour Registry of Canada Survival Report was released, looking at 1-, 2-, and 5-year survival rates for primary brain tumours in four provinces representing 70 per cent of the Canadian population. The addition of non-malignant tumour data makes this report a first-of-its-kind. A pan-Canadian report using data from all provinces and territories is due out later this year.
Feedback from the brain tumour community
Joseph F. Megyesi
“Our hope is that the Brain Tumour Registry of Canada will help us to better understand the cause of the many different kinds of brain tumours in Canada and worldwide, and that ultimately it will lead us to better treatments and possibly even a cure for this devastating disease.”
It is critical to know the true incidence of brain tumours in Canada so that we can start to truly understand the burden of these diseases. For patients, I hope this means knowing they will have a voice in the numbers. For researchers, this means being able to more accurately understand brain tumours, the people they affect, and their impact in Canada.
The creation of a national registry is the epitome of hope by ensuring that every brain tumour gets counted in Canada and providing us with a better understanding of the causes of the disease. Thanks to the hard work and unwavering commitment of so many people for over more than a decade, it is finally coming to fruition.
J. Easaw, MD
By improving our understanding of the incidence of brain tumours in Canada, we gain an understanding of the burden of disease between different geographical areas, between different socio-economic groups and within Canada as a whole. These estimates ultimately help us develop appropriate longer term cancer control strategies and be used by health authorities to plan the resources needed to treat patients with these tumours, deliver rehabilitation services, screen for recurrences and provide funding for longer term counselling and support.
I am a brain tumour survivor. When I was diagnosed, six years ago, I went to an event where the researcher talked about how the data he was using was extrapolated from data from the USA and applied to the Canadian provinces. It’s so important that researchers use Canadian data. I immediately became an advocate for this Registry and am so pleased to see it come into existence.
Rosemary Cashman, Nurse Practitioner BC Cancer, Vancouver and Board of Directors Brain Tumour Foundation of Canada
The Brain Tumour Registry will permit the standardized collection of epidemiological data concerning benign and malignant brain tumours across Canada. This critical advance will provide a firm foundation for brain tumour research, facilitate the allocation of government funding to support patients and families and lead to improved access to better therapies for these diseases.
Data have been provided for the 2019 surveillance report and the 2020 survival report by four provincial cancer registries: British Columbia, Alberta, Manitoba, and Ontario.
Data have been provided for the 2021 incidence and mortality report from Statistics Canada.
This work has been funded by Brain Tumour Foundation of Canada, the Brain Cancer Foundation through the Canada Brain Research Fund, with the financial support of Health Canada and in collaboration with the Public Health Agency of Canada.