Canadian Brain Tumour Registry

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 Canadian Brain Tumour Registry 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 Canadian Brain Tumour Registry that will count every brain tumour in Canada.

We need your help. Please support this project! 
Donate now.
Your contribution will be DOUBLED!

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

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.

Text to Donate

Text BRAINTUMOUR RGSTRY to 20222 to donate $10 to ensure that every brain tumour counts.

As these funds will go to support the Brain Tumour Registry Project and so these funds will be also be DOUBLED!  Find out more about Text to Donate.

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.

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

In order for any of the above aims to be realised, Brain Tumour Foundation of Canada needs to fundraise $230,000 over the next 3 years.

We need your help. Please support this project! Donate now.
Your contribution will be DOUBLED!

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

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

Susan Relecom
srelecom@braintumour.ca
1-800-265-5106 or 519-642-7755, ext. 227
 

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 Canadian Brain Tumour Registry, please contact:

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

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