Issue: Counting Every Brain Tumour

Knowing the number of Canadians affected by a brain tumour - including all stages and grades - is critical to supporting every Canadian affected by this disease.

2016 Update

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. Find out more on our Registry page.

2015 Update

The feasibility study into a Canadian Brain Tumour Registry is now complete. We are confident that a standardized system to gather brain tumour statistics is possible. A three-year plan for its development is now in progress. When established, this registry will help accelerate efforts to ensure equal access to drugs, treatments and services for all brain tumour patients. A report on the next steps for this exciting project is expected early 2016.

2013 Update

Throughout 2013 several keys steps were taken towards counting every brain tumour in Canada. The feasibility stage of the Canadian Brain Tumour Registry project is well underway.

Dr. Faith Davis has met with several researchers, clinicians, advocates and representatives of government agencies over the past year to: gain more insight into the current state of data collection on brain tumours in Canada, the key players and the work that needs to be done. This included a meeting in October that brought together the Public Health Agency of Canada, the Canadian Council of Cancer Registries, the Canadian Alliance of Brain Tumour Organizations, the research and clinical community and Brain Tumour Foundation of Canada's advocacy and research volunteers.

The next step in this initiative include an interim report, a pilot project and a deeper examination of the data that currently exists.
 

Background

In Canada, data collection on brain tumours is incomplete. To date, brain tumour statistics have relied on data from a number of American and Canadian resources to guide Canadian research, secure funding, provide programs and raise awareness. Currently, this data is incomplete and we believe it is not a true reflection of Canada's brain tumour community. This must change.

While some organizations do produce useful data, full data on the primary brain tumour population is not collected, resulting in misreporting of the incidence and prevalence of brain tumours. In fact, in Ontario, non-malignant brain tumours are not counted at all.

Accurate information about the number of brain tumour patients across Canada is critical to their best treatment, care and to finding efficiencies in the system. This issue has been addressed nationally through a Parliament of Canada 2007 private members bill (M235), led by the Canadian Alliance of Brain Tumour Organizations, along with a number of other efforts by the brain tumour community. This bill and the resulting follow-up efforts are focused on influencing the cancer registry system in Canada to effectively and efficiently track all types of brain tumours.

A concrete understanding of incidence would improve patients’ quality of lives and reduce costs to the health care system.

Why This is Important

The impact of the diagnosis of a non-malignant brain tumour extends beyond survivors to their families, workplaces and communities. With comprehensive data, brain tumour patients will see their lives improved by: Brain Tumour Foundation of Canada and other organizations assisting in lifting the burden of the disease through programs and services and the province’s ability to improve health care delivery.

Improving the Lives of Brain Tumour Survivors

We estimate that every day, 27 families learn a loved one has a brain tumour. Because of the location of the tumour, families can be as devastated by a non-malignant brain tumour as those facing a malignant diagnosis. By understanding the number of people affected, we can improve their productivity and quality of life. From lost wages to the high cost of treatments and medications, the burden of a brain tumour on a family can be enormous. This support will reduce the direct and indirect costs borne by families as a result of the disease. Because most people diagnosed with a non-malignant brain tumour survive, this an opportunity to make an impact and improve lives.

Impact on the Provinces

Incomplete or inaccurate brain tumour data has 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 tumours, will allow for the enormous treatment cost to be planned for, targeted and reduced. Additionally, because of the wide-ranging impact of a brain tumour,  non-malignant brain tumour survivors and their families can come to rely on government programs like Ontario Works. Knowing the number of these families will help improve supports.
 

Watch this space for future opportunties to lend your voice to this important issue.

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Learn more about the efforts to launch the Canadian Brain Tumour Registry and how you can help fund it.

 

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