Toronto, ON – September 23, 2021 – Canada’s epilepsy community has spoken, and the result is a Top 10 list of research priorities that they want answered about epilepsy and seizures. The list will be announced at the Canadian League Against Epilepsy Congress Scientific meeting Sept 24-26.
The Top 10 initiative was led by EpLink – the Epilepsy Research Program of the Ontario Brain Institute, in collaboration with the James Lind Alliance and the Ontario Brain Institute (OBI) over a two-year process which saw Canadians submit and prioritize their most pressing questions related to epilepsy and seizures. The final top 10 list was reached by consensus at a virtual workshop involving members of the epilepsy community.
“Research agendas are often set by researchers or by industry, and may not reflect the needs of the epilepsy community,” said Tom Mikkelsen, President & Scientific Director of OBI, which helped lead the first priority-setting partnership (PSP) in Canada. “This priority-setting partnership provided an opportunity to hear from those who directly live and work with epilepsy and seizures, to make sure their voices are accurately represented.”
Approximately 300,000 Canadians are currently living with epilepsy, and it remains an under-researched brain disease. People with epilepsy often report having a lower quality of life and higher usage of health care resources compared to other chronic conditions. Ultimately, more research is needed to address unanswered questions related to the cause, diagnosis and treatment of seizures and co-existing conditions (e.g., depression, anxiety).
“As a neurologist, I see the impact of epilepsy every day. This list helps me understand the needs of my patients and what is most important to them,” said Dr. Ana Suller-Marti, Co-Chair of the Epilepsy PSP Steering Committee and Neurologist at the London Health Sciences Centre.
The top consensus priority question centered around genetic markers, “Can genetic markers be used to diagnose and treat epilepsy and seizure disorders?”
“Understanding the role of genetics in the development of epilepsy is critical to finding the right treatment for the right person. Moreover, more research about genetic markers will improve knowledge and help guide decisions regarding the prevention, prediction, diagnosis and treatment of epilepsy and seizures,” said Dr. Elisabeth Simard-Tremblay, Montreal Children’s Hospital.
Billie Jean Colborne, a PSP workshop participant from Gander, Newfoundland, said: “After watching my father suffer with epilepsy, I was diagnosed at the age of 42. I am unable to work, and my friends have distanced themselves, but I keep pushing because there has to be a better way. There has to be answers: why some suffer more than others, what are the causes and what treatments help. We deserve answers. We deserve more.”
This top 10 list is an important first step in ensuring that funds and resources are genuinely focused on the issues that will benefit people living with epilepsy, their caregivers, and clinicians. To learn more about this initiative, please visit: braininstitute.ca/epilepsy-psp.
The top 10 priority research questions:
- Can genetic markers be used to diagnose and treat epilepsy and seizure disorders?
- What are the impacts of long-term use of anti-seizure drugs, the causes of side effects of these treatments and how can we prevent the side effects?
- What are the long-term impacts of seizures on a person’s brain, and overall health and development?
- How can the risk of SUDEP (Sudden Unexpected Death in Epilepsy) be reduced in people with epilepsy?
- What is the most effective testing protocol for determining causes of seizures and/or a diagnosis of epilepsy or other seizure disorders and to reduce time to diagnosis?
- What are the brain changes, on a cellular level, that lead to seizure development?
- How effective is surgical treatment for adult and children who experience seizures/epilepsy?
- What causes memory problems associated with seizures? Can these memory problems improve over time and what are the best treatment options for memory loss in people who experience seizures?
- Aside from anti-seizure drugs and some brain lesions, what causes behavioural changes in people who experience seizures? What is the best way to treat behavioural issues?
- What is the efficacy (i.e., the effectiveness of reducing seizures) of adding a second anti-seizure medication compared to changing to a different anti-seizure medication? How can we determine which combinations of anti-seizure drugs are effective?
EpLink – The Epilepsy Research Program of the Ontario Brain Institute is dedicated to reducing seizures and improving quality of life for people with epilepsy through research. We have over 25 researchers and over 30 collaborators from eight universities and hospitals across Ontario working to improve drug, diet and genetic therapies, surgical outcomes, brain monitoring and modulation, and quality of life for people with epilepsy. We work with industry partners, patients, caregivers, and community epilepsy agency representatives to bring our research to the community. We also host research talks and public education events to raise epilepsy awareness. For more information about our program, please visit eplink.ca.
About the Ontario Brain Institute
The Ontario Brain Institute is a provincially funded, not-for-profit organization that accelerates discovery and innovation, benefiting both patients and the economy. Our collaborative ‘team science’ approach promotes brain research, commercialization and care by connecting researchers, clinicians, industry, patients, and their advocates to improve the lives of those living with brain disorders. Welcome to Brain Central. Visit www.braininstitute.ca for more information. Funding provided, in part by, the Government of Ontario.
About the James Lind Alliance
The James Lind Alliance (JLA) infrastructure is hosted by the National Institute for Health Research (NIHR) to provide the support and processes for Priority Setting Partnerships (PSPs). PSPs aim to help patients, caregivers and clinicians work together to agree which are the most important treatment uncertainties affecting their particular interest, in order to influence the prioritisation of future research in that area. For further information, visit the JLA website (www.jla.nihr.ac.uk).
Project Coordinator, Epilepsy PSP
Communications Lead, EpLink
Ontario Brain Institute