The Brain Tumour Registry of Canada (BTRC) which was launched this May is a national, multi-center initiative to create an epidemiological surveillance tool of brain tumours across the country. It will facilitate the development of a pan-Canadian surveillance report similar to the Central Brain Tumour Registry of the United States (CBTRUS). The similar registries in the US allow researchers to identify evolving patterns
in the incidence rates related to geographical, regional and socioeconomic differences. A Canadian-centric brain tumour registry will improve evidence-based medicine and provide critical data for improving patient care.
One of the major limitations of existing national pan-cancer registries is that benign tumours in the brain, such as acoustic neuromas and meningiomas, are not tracked. The omission of benign brain tumours provides an incomplete census on brain tumour statistics in the country. Unlike in most other organs, benign tumours that develop in the brain may lead to significant morbidity and mortality, even when successfully surgically removed. Therefore, it is imperative we track these important tumours within the country to provide accurate epidemiological data and provide government and institutions with information to help allocate health care and research funds appropriately.
Efforts to develop a Canadian brain tumour registry began in earnest in 2007, with the government passing a private member’s motion mandating the collection of all primary brain tumours. Dr. Faith Davis, a professor at the University of Alberta supported by generous funds from the Canadian Brain Tumour Foundation, has spearheaded the development of this comprehensive registry. Currently, four provincial cancer registries (British Columbia, Alberta, Manitoba and Ontario) have provided data representing 70% of the Canadian population.
The first report released in May 2019 provides a summary of the incidence of brain tumours between 2010-2015. The registry reported an average of 23.5 new brain tumours diagnosed per 100,000 population, of which 64% were benign tumours. Early data from the registry emphasizes how previously available pan-cancer tumour registries would under-represent the incidence of brain tumour registries, if only malignant tumours were recorded.
In the context of the Acoustic Neuroma Association of Canada (ANAC), the development of the Brain Tumour Registry of Canada will help better understand the epidemiological profile of acoustic neuromas in Canada and identify potential gaps in care. The first report identified over 1000 cases of new acoustic neuromas being diagnosed in a span of five years. Representative epidemiological data is important to help raise awareness in the general public and lobby the government for additional resources to help specific under-recognized disease processes.
Dr. Gelareh Zadeh, who is a neurosurgeon-scientist and Co-Director of the Krembil Research Institute at the Toronto Western Hospital, University Health Network, and Chair of ANAC’s Scientific Medical Affairs Committee states that “the Brain Tumour Registry of Canada will be a powerful tool for us to understand the impact of acoustic neuromas in Canada. Data gleaned from this initiative will elucidate areas within Canada that are underserviced with regard to the management of acoustic neuromas and further develop Centers of Excellence with expertise in multi-modal management”.
Notably, Jennifer Gouchie-Terris of Moncton, N.B., clearly demonstrates the true power of patient-led advocacy and how loud their voices can resonate. After her son, Brandon Dempsey, was diagnosed with a non-malignant brain tumour in 1998, she started advocating for a national brain tumour registry. Her persistence and strength led to the initial government’s private member’s motion in 2007. The Brain Tumour Registry of Canada will be a great tool to amplify the voice of the Acoustic Neuroma Association of Canada and bring awareness across the country.
Dr Suganth Suppiah is a neurosurgery resident and graduate student pursuing his Ph.D. under the supervision of Dr Gelareh Zadeh at the University Health Network.
He has a strong interest in understanding the molecular drivers of oncogenesis in peripheral nerve sheath tumours, such as acoustic neuromas. He completed his medical training at the University of Western Ontario and is in the process of completing his neurosurgery training at the University of Toronto. Ultimately, Dr Suppiah aspires to be a surgeon-scientist who aims to uncover novel therapeutics for peripheral nerve tumours.