Brain Tumour Registry of Canada

Every brain tumour patient matters, let's make sure they count

To date, 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.

By establishing the Brain Tumour Registry of Canada to count every person with a brain tumour in Canada, we can be sure that accurate Canadian data about brain tumours is available. This will accelerate our advocacy efforts to ensure equal access to drugs, treatments and services for all brain tumour patients.

With your support, Brain Tumour Foundation of Canada is building the first Brain Tumour Registry of Canada that will count every brain tumour in Canada.

Update, August 7, 2019

We are delighted to announce that the website and first report are now available in French for the Brain Tumour Registry of Canada - a surveillance research collaborative. www.registretumeurscerebrales.ca

To ensure that Quebec & other provinces are included in future reports, we need your help. Please give generously to ensure that we can continue to count every brain tumour. 

Update May 14, 2019

Thanks to the hard work of brain tumour advocates and loyal support from hundreds of donors, today sees the launch of the Brain Tumour Registry of Canada - a surveillance research collaborative.

See the first report, representing 70% of the Canadian population at www.BrainTumourRegistry.ca or see this Infographic with some of the key information from this report (PDF).

Please note: This is not a patient populated registry. Data is collected through institutions where patients are diagnosed, in order to ensure that every brain tumour is counted.

Photos from the launch event:

Registry Launch Photo   Registry Launch Photo

Pictured from left to right: Jennifer Gouchie-Terris, Dr. Faith Davis, Susan Marshall, Dr. Joseph Megyesi, panelists at the event.

Update May 2019

We are expecting the first incidence report from the Brain Tumour Registry of Canada in May 2019. This first report, in partnership with four provincial cancer registries, speaks to 67% of the Canadian population. This is the first report to incorporate non-malignant brain tumours in Canada. We hope to release a further survival report later this year and, with your support, in 2020 a comprehensive national report will include incidence and survival data for the entire Canadian population. We will not stop until every brain tumour is routinely counted, as every brain tumour counts!

Update - 2019

The latest article relating to the Brain Tumour Registry of Canada has been published: "Malignant primary brain and other central nervous system tumors diagnosed in Canada from 2009 to 2013."

Update - May 2018

On May 3, 2018, Dr. Faith Davis gave an update on the Canadian Brain Tumour Registry via webinar. Watch a recording of that webinar here:

Update - November 2017 

With thanks to all the activity on #GivingTuesday plus funds we anticipate to come in this year, we think that we have achieved our fundraising goal for the initial 5 aims of the Canadian Brain Tumour Registry project!

Fundraising for this project will still continue, as there is lots of work to be done before the first report can be published in 2019. Until then, we are so thankful to you all.

Find out more about the need for this project in this pdf.

Update - October 2017

An article was published in Current Oncology: Conditional survival after a diagnosis of malignant brain tumour in Canada: 2000-2008.

Update - July 2017

As more non-malignant brain tumours were identified in Alberta than were previously anticipated, the time taken to review all 942 cases (from 2010-2014) took longer than anticipated. Work continues on this project, including data collection in British Columbia. All the latest updates can be found in this report. Fundraising to complete this project also continues.

Update - January 2017

International data suggests that Canada has one of the highest incidence rates for brain cancer in the world. Canada has not systematically recorded incidence rates for all primary brain tumours, traditionally omitting non-malignant brain tumours. An estimated two-thirds of all non-malignant brain tumours are not reported in cancer registries and yet they can be just as devastating as malignant ones. This must change in Brain Tumour Foundation of Canada’s 35th anniversary milestone year. Learn more about this updated statistic in our press release dated January 30, 2017, to mark Brain Tumour Foundation of Canada's 35th Anniversary.

Side Project - Fall 2016

In the fall of 2016 an article was published in the Journal of Registry Management, on Pediatric Brain Tumours in Alberta. This case ascertainment came about as a result of the Canadian Brain Tumour Registry project and talks to the importance of this project: “Incomplete or inaccurate brain tumor data have a direct effect on the ability of a province to accurately assign health care dollars by region, create centres of excellence for treatment, create efficiencies and plan for the greatest needs. The more that is known about the incidence of all types of brain tumors, will allow the enormous treatment cost to be planned for, targeted and reduced.” Read the full article here.

An article was also published in 2016 by the Canadian Public Health Association on Canadian brain cancer survival rates by tumour type and region: 1992-2008. Read the full article here.

Project Update - Summer 2016

In 2016, with Dr. Davis’ feasibility study concluding that the project is feasible, Dr. Davis and Brain Tumour Foundation of Canada submitted a joint application to Brain Canada requesting matching funds for 50% for this project. 

The Canadian Brain Tumour Registry Project was recognized as one of the top 7 projects in Canada and was offered matching funds by Brain Canada. To leverage this funding opportunity, and complete all 5 aims of the Canadian Brain Tumour Registry, Brain Tumour Foundation of Canada needs to fundraise $230,000 over the next 3 years.  For which we need your help!  Please support this project with a generous financial commitment

Project Background

Brain Tumour Foundation of Canada is determined to improve the availability of accurate, complete and analyzed data of malignant and non-malignant brain tumours in the Canadian population. This data is necessary to secure increased funding for research, health-care delivery and drug approval by Canadian federal and provincial agencies.

The Brain Tumour Registry is based on the successful experience of the brain tumour community in the United States with the Central Brain Tumour Registry. Established in 1991, the Central Brain Tumour Registry of the United States (CBTRUS) collects and reports comprehensive data on American brain tumour patients and survivors – including prevalence, incidence, and survival data.

The implementation of CBTRUS has led to significant enhancements in the brain tumour community in the United States. While data collected by CBTRUS is used by the Canadian brain tumour community, it is incomplete and is not a true reflection of brain tumours in Canada.

In 2011, Brain Tumour Foundation of Canada invested $122,000.00 to conduct a Canadian feasibility study to determine what information already existed and how difficult it would be to correlate this information into one centralized data base. We hired renowned Epidemiologist, Dr. Faith Davis, to lead this project. Dr. Davis had extensive experience in developing a brain tumour registry in the United States called the CBTRUS (Central Brain Tumour Registry of the United States). After a 2 year study, Dr. Davis determined that it was feasible to move forward with Phase 2 of this project – to establish a Canadian Brain Tumour Registry for which Brain Tumour Foundation of Canada is currently seeking funding.

Now that the feasibility study is complete, there are five aims to the next stage of the project:

  1. Supplement registry activities (BC, AB) to obtain data on non-malignant brain tumours (including meningiomas, low grade gliomas, acoustic neuromas).

  2. Create a first Canadian brain tumour surveillance report (from BC, AB, MB, ON, QB) similar to that published by the CBTRUS in the US.

  3. Develop approaches to support collaborative research.

  4. Develop recommendations for the collection of relevant molecular data and tumour classification information critical for monitoring treatment decisions and outcomes.

  5. Fund a collaborative demonstration project between Dr. Marshall Pitz (Winnipeg) and Dr. Jay Easaw (Calgary) which explores clinical case identification and coding for patients on Avastin. This project will provide insight as to the efficacy of this drug treatment for a larger population base. 

Next Steps

We still need your help. We may have released the first report, but that only contains information from four provinces representing 70% of the Canadian population. We want every Canadian brain tumour to count and need funds to ensure the longevity of this project. Every brain tumour matters, so every brain tumour needs to be counted!

 

To help fund the Brain Tumour Registry of Canada, please contact:

To help fund the Canadian Brain Tumour Registry, please contact:

Suzanne Fratschko Elliott
Fundraising and Engagement Manager
sfelliott@braintumour.ca
1-800-265-5106 or 519-642-7755, ext. 227 

To learn more about the Brain Tumour Registry of Canada, please contact:

Susan Ruypers
Research Program Specialist
sruypers@braintumour.ca
1-800-265-5106 ext 240

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