Building A Brain Tumour Registry Will Save Canadian Lives
Patient Perspective There is a current lack of Canadian data on brain tumours and building a registry will help to save lives.
An estimated 55,000 Canadians live with brain tumours, with 27 new diagnoses made every day, according to the Brain Tumour Foundation of Canada. While those are important figures, a complete picture of brain tumour health issues amongst Canadians is not available due to a lack of crucial data.
Dr. Faith Davis, Vice-Dean of the University of Alberta’s School of Public Health, is determined to change that. Backed by 20 years of experience with brain tumours, she has become one of the leaders in creating a Canadian Brain Tumour Registry. “There’s an urgent need for data to be recorded completely and accurately,” she says.
The Brain Tumour Registry could produce its first report in 2019 — one that could save lives by providing health care professionals with more comprehensive data. “Right now, we just don’t know how widespread brain tumours are in this country,” Dr. Davis explains. “The figures we have are based on statistics from the United States that may not apply here. Canada may have some of the highest rates of brain cancer in the world, according to one report.”
A mother’s quest to assist others
As a mother who lost her son to a brain tumour, Jennifer Gouchie-Terris, a journalist from Riverview, NB, is equally committed to making a national registry a reality. Her son, Brandon, was just 18 years old when he passed away, ending his battle with a non-malignant low-grade glioma, which began at age four.
Brandon’s initial symptoms — vomiting, headaches, and a loss of balance — had doctors stumped. “There was a long time before diagnosis because brain tumours just aren’t on the radar for many physicians,” Gouchie-Terris says.
Unfortunately, over the last 50 years, very little progress has been made in the treatment and long-term survival rates of brain tumour patients. A lack of good statistics plays a big role in this stagnation.
Things are changing, however. Gouchie-Terris was successful in collaborating with her local member of parliament, Bill Casey, to introduce the Private Members Bill M-235 to establish the Canadian Brain Tumour Registry on Valentine’s Day, 2007. She and Brandon met with former Prime Minister Stephen Harper in Ottawa just before the bill was passed in the House of Commons. It was a victory, but there was no money attached to the bill, and the need for funding is critical.
Brandon worked to boost awareness, visiting schools, hosting and funding fundraising events, and sharing his story far and wide. “He was very unselfish,” his mom says. Even after his death in October of 2012, he fought for the cause by donating his organs and brain to research.
Gouchie-Terris and her husband Darren are continuing the work they started. Last fall, the couple embarked on a 500-km trek as part of the Riding for the Registry fundraiser and cycled from Cambodia to Bangkok, Thailand, raising a total of $60,000 for the cause. “I find comfort in moving forward with what we started, establishing the registry and helping other families affected by brain tumours,” Gouchie-Terris says. “It’s Brandon’s legacy. I can still hear him saying, ‘Good for you, mom! I’m so proud!’”
With much important groundwork completed, the next step for moving the registry forward is getting the necessary funds. The provinces and the medical community are on board. Now, it’s up to Canadians to build on the efforts of people like Dr. Davis and Jennifer Gouchie-Terris by donating to the Brain Tumour Foundation of Canada (braintumour.ca), the non-profit organization currently celebrating 35 years of providing hope and support.
“This registry is within reach if we can get the funds needed,” Gouchie-Terris says. “We hope to build a tool that will help us understand brain tumours better and to spare Canadian families the heartache we experienced.”