Welcome to the Brain Tumour Registry of Canada

Every brain tumour patient matters, they count!

The Brain Tumour Registry of Canada has been established to ensure that every brain tumour in Canada is counted. Until recently, Canada has relied on data from a number of American and Canadian data resources to guide Canadian research, raise awareness, secure government funding and provide support programs – data that is incomplete and not a true reflection of Canada’s brain tumour community.

Now, we are pleased to be able to provide you with the first incidence report, from four provinces, that speaks to 70% of the Canadian population. A further survival report will be released later this year and in 2020 a comprehensive national report will include the entire Canadian population, including incidence, survival and prevalence data. We will not stop until every brain tumour is routinely counted, as every brain tumour counts!

About

By counting every brain tumour in Canada, we will get one step closer to finding the cause of and prevention for all brain tumours. We are working to improve the availability of accurate, complete, and analyzed data of malignant and non-malignant brain tumours in the Canadian population.

Learn more

Summary of results

Brain tumours are unpredictable and complex. They can affect vision, hearing, memory, balance, and mobility. Their effects are physical, emotional, financial, and last a lifetime. There is no cure.
Learn more about the research.

See the Fact sheet

Full reports

Find comprehensive data on the incidence rates for all primary brain tumours (both malignant and non-malignant) periodically by important patient characteristics (location, histology, sex, age, and region) to better understand the patterns of occurrence and survival.

See our full report

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.”

Joseph F. Megyesi, MD, PhD, FRCSC Division of Neurosurgery London Health Sciences Centre, University Hospital, London, ON Past-Chair, Board of Directors, Brain Tumour Foundation of Canada

Marshall Pitz

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.

Marshall Pitz, MD FRCPC, Medical Oncologist, CancerCare Manitoba

Jennifer Gouchie-Terris

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.

Jennifer Gouchie-Terris, Mother of Brandon (1994-2012), New Brunswick

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.

J. Easaw, MD, Neuro Oncology Cross Cancer Institute, Edmonton, AB

Lawrence Traa

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.

Lawrence Traa, Brain Tumour Survivor, Manitoba

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.

Rosemary Cashman, Nurse Practitioner, BC Cancer, Vancouver, Board of Directors Brain Tumour Foundation of Canada

Our partners

Data have been provided for the 2019 surveillance report by four provincial cancer registries: British Columbia, Alberta, Manitoba, and Ontario

This work has been funded by Brain Tumour Foundation of Canada, the Brain Canada Foundation through the Canada Brain Research Fund, with the financial support of Health Canada.