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Jennifer Gouchie Terris holds photos of her son, who she lost due to a brain tumour, after attending the Canadian Brain Tumour Registry to Launch event in Toronto on Tuesday, May 14.Tijana Martin/The Globe and Mail

Canadians with brain tumours will have their abnormal tissue masses tracked through a new national registry that researchers say will provide critical information for improving patient care.

The Brain Tumour Registry of Canada, launched on Tuesday, collaborates with existing provincial and territorial cancer registries to collect data on all primary brain tumours, or tumours that start in the brain, including those that are malignant (cancerous) and non-malignant.

Previously, the cancer registries of each province and territory, which gather data for the Canadian Cancer Registry, recorded only information on cancerous tumours, explains lead researcher Faith Davis, who helped develop the new brain-tumour registry. But by not tracking non-malignant brain tumours, these registries provided an incomplete picture of the brain-tumour patient population, she says.

“People think because it’s not malignant, they’re not important. But the fact is that they are important because they’re in the brain,” says Dr. Davis, a professor in the school of public health at the University of Alberta, noting that both malignant and non-malignant tumours can affect vital functions of the brain and affect patients’ cognitive abilities and quality of life. “So this [national brain-tumour registry] will give an opportunity to ask questions about how to improve quality of life, how to improve survival in these subsets of patients for whom we have not had specific information before.”

Although Parliament passed a private member’s motion in 2007 mandating the collection of all primary brain tumours, it took several years before getting the resources and infrastructure needed to create a national registry, Dr. Davis says. The registry is a collaborative initiative, whose development was spurred and partly funded by the charity, Brain Tumour Foundation of Canada. While the existing provincial and territorial cancer registries collect the data, Dr. Davis and her colleagues at the registry provide quality control and analysis of the data, and write reports to make that information available to the research community.

In the first of what is expected to be a biannual report, the Brain Tumour Registry of Canada on Tuesday provided incidence rates of brain tumours between 2010 and 2015, based on data from four Canadian provinces: B.C., Alberta, Manitoba and Ontario. Dr. Davis says subsequent reports will include data from the rest of the country. The report showed an average of 23.5 new cases of brain tumour per 100,000 population, 64 per cent of which were non-malignant. It also found that glioblastomas were the most common type of brain tumour in men, while meningiomas were most common in women.

Since an estimated 95 per cent of meningiomas are non-malignant, these cases were not counted in the past by cancer registries, Dr. Davis says. “So there is a whole group of female-preponderant tumours that we’re now going to be able to follow."

At the Krembil Brain Institute in Toronto, medical director Gelareh Zadeh, who is not involved in the brain-tumour registry, says she welcomes the initiative.

Dr. Zadeh, who is a neurosurgeon and senior scientist, says a similar database in the United States – the Central Brain Tumour Registry of the United States – allows researchers to identify evolving patterns, such as incidence rates related to geographical, regional and socioeconomic differences, as well as gaps in care. A Canadian registry can provide critical data that is specific to this country, she says.

It can also help create public awareness about brain tumours, which do not receive the same amount of attention as cancers such as breast, lung or prostate cancer, Dr. Zadeh says.

Jennifer Gouchie-Terris of Moncton, N.B., who advocated for the 2007 private member’s motion, says Tuesday’s launch of the national registry is a weight off her shoulders. Ms. Gouchie-Terris’s son, Brandon Dempsey, was diagnosed in 1998 with pilocytic astrocytoma, a non-malignant brain tumour, at the age of 4. He suffered symptoms, including severe headaches, nausea and visual disturbances. Over time, the tumour changed, leading to his death in 2012 at 18.

Ms. Gouchie-Terris recalls two weeks before he died, Brandon had asked her to keep fighting for a registry, something she had pushed for when she realized brain tumours were not well tracked in Canada.

“It was very important to him because he knew what it meant for so many people,” she says. “I’m very relieved and very happy, and I know that Brandon would be very happy that it finally happened.”

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