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National brain tumour registry offers hope to patients and their families

Jennifer Gouchie-Terris looks over a photo of her son, Brandon Dempsey, who passed away in 2012 from a brain tumour. She had been advocating for the creation of a national brain tumour registry – a promise she made to her son before he died.
Jennifer Gouchie-Terris looks over a photo of her son, Brandon Dempsey, who passed away in 2012 from a brain tumour. She had been advocating for the creation of a national brain tumour registry – a promise she made to her son before he died. - Contributed

A promise kept

MONCTON, N.B. —

Before her son Brandon Dempsey died in 2012, Jennifer Gouchie-Terris made a promise to him.

She pledged to continue working toward the creation of a brain tumour registry. It hasn’t been an easy journey, but one that came to a successful conclusion on May 14 when the Brain Tumour Foundation of Canada launched the first ever registry that will become a cornerstone to optimizing clinical outcomes using evidence-based decision making for treatment and care of brain tumour patients across Canada.

“There were times I wondered if we’d ever see it, but it’s something that was very important to me because of the promise I made to Brandon,” said Gouchie-Terris, a former reporter with the Amherst Daily News and editor of the Amherst Citizen. “It’s been a long, hard haul for sure but the last few years the momentum has been building and have finally reached the point where the registry has been announced.”

Brandon was only four years old in 1998 when he was diagnosed with a low-grade non-malignant glioma. Because of the location of the tumour, he had numerous resections, chemotherapy and radiation before age eight.

“There is a common misconception that non-malignant brain tumours are not life-threatening, but they can be just as fatal as malignant tumours because of location and the fact they can change and become more aggressive with time and treatment,” said Gouchie-Terris.

She admitted to being shocked to learn of the inconsistency in the collection of data on non-malignant tumours. She talked to Cumberland-Colchester MP Bill Casey and she and Brandon went to Ottawa to attend the first reading of Casey’s private members bill that called for the creation a national registry and both she and her son met then prime minister Stephen Harper.

The private members bill passed in the House of Commons in 2007, but there was no funding attached.

The Brain Tumour Foundation identified the gap in available information on Canadian brain tumour patients and prioritized the development of a nationwide surveillance report. A collaboration to explore the feasibility of this goal was developed between the foundation and Dr. Faith Davis at the University of Alberta in 2012.

The award of a Brain Canada grant in 2015 provided additional support to create this data collaboration.

The registry was conceived by a foundation committee chaired by Dr. Joseph Megyesi while advocacy efforts by Gouchie-Terris focused on obtaining complete data to create evidence to support brain tumour policy and research.

The Public Health Agency of Canada subsequently explored the gap in the collection and reporting of non-malignant brain tumour data and identified barriers to data collection within provincial and territorial cancer registries.

At that time, only three of 13 regional registries formally collected information on non-malignant and CNS tumours.

The new national registry’s goal is to provide comprehensive data on the incidence, prevalence and survival rates for all primary brain tumours periodically by important patient characteristics to better understand the occurrence and survival. These patterns will stimulate hypothesis about causes, treatment and improved outcomes in the neuro-oncology research community and support clinical and policy guideline formation.

The first incidence report from four provinces captures 70 per cent of the nation’s population and it is hoped that by 2020 a comprehensive national report will include the entire population, including incidence, survival and prevalence data.

“For me, it has always represented hope,” Gouchie-Terris said. “For years we didn’t have good data. What Dr. Davis did is take four provinces and did a surveillance and completed an incidence report. We were quite surprised by the outcome in many ways, but there were some things that weren’t a surprise in that the non-malignant tumours were being left out.”

In 2011, Brandon had just begun his final year of high school in Moncton when he began displaying strange neurological symptoms. An MRI showed an inoperable mass that would later be determined to be an aggressive anaplastic astrocytoma. He received more chemotherapy, but passed away 13 months later.

“Despite being terminally ill, Brandon continued to look to the registry for hope, not only for himself, but others like him,” Gouchie-Terris said. “He asked to have his brain donated to science for medical research, requested to be an organ donor and despite his age and condition, continued to advocate for a brain tumour registry.”

She believes the registry will mean better patient services for families and improved research as well as more clinical trials.

“Brain tumour patients and their families can look forward to a brighter future. To me that is what the registry always stood for,” she said. “I knew we would get here, but there were times that it was discouraging because it felt like for every one step forward there were two steps back. Once the brain tumour foundation and Dr. Davis got involved I knew it was going to happen, though.”

For Casey, the registry is a tribute to Dempsey and Truro’s Matt MacDonald, who passed away 19 years ago from a brain tumour at age 14.

“One of the things that amazed me about the process was the fact so many members of parliament stood up when I first introduced the private members bill and said they knew someone who had a brain tumour,” Casey said.

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