The Canadian Brain Tumour Registry Project
nternational data suggests that Canada has one of the highest incidence rates for brain tumours 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 tumours. This must change in 2017, which also happens to be Brain Tumour Foundation of Canada’s 35th anniversary milestone year. For years, Brain Tumour Foundation of Canada has estimated that 27 Canadians are diagnosed with a brain tumour each day. This figure is based on data that has been extrapolated from the Central Brain Tumour Registry of the United States (CBTRUS) and applied to the Canadian population. Given international variation in incidence rates of brain tumours, this assumption should be replaced with accurate data. Brain Tumour Foundation of Canada has long advocated for every brain tumour in Canada to be counted, which is why we have started the Canadian Brain Tumour Registry project. Brain Tumour Foundation of Canada is now advocating to complete the funding of this project in 2017, which would bring hope to the thousands of Canadians living with a brain tumour. Canadians such as Jennifer Gouchie-Terris, who has worked tirelessly to establish Canada’s first brain tumour registry. Jennifer’s son Brandon was diagnosed with a low-grade piloctyic astrocytoma at the age of four. The location of this tumour, deep inside Brandon’s brain made it difficult to achieve a complete resection. After four years of treatment, including surgeries, chemotherapy and radiation, Brandon’s disease stabilized and he enjoyed ten amazing years of near-perfect health.
Above: Brandon and his beloved dog
Brandon and Jennifer were shocked to find out that brain tumours were inconsistently tracked in Canada, with some provinces and territories not collecting any data on brain tumour types at all in 1998. Together Brandon and Jennifer helped develop a Private Members Bill that called for the creation of a national registry to capture data on all brain tumours, both malignant and non-malignant. Private Members Bill M-235, which called for
The eighth annual edition of the official magazine of the International Brain Tumour Alliance (IBTA).