The Top 10 initiative was led by EpLink – the Ontario Brain Institute’s epilepsy research program, working with the James Lind Alliance and the Ontario Brain Institute (OBI) in a two-year process that saw Canadians submit and prioritize their most pressing issues related to epilepsy and seizures. The final top 10 list was established by consensus during 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 and Scientific Director of OBI, who helped lead the first Priority Setting Partnership (PSP) in Canada. “This priority-setting partnership has provided an opportunity to hear from people who live and work directly with epilepsy and seizures, to ensure their voices are properly represented.
About 300,000 Canadians are currently living with epilepsy, and it is an under-researched brain disease. People with epilepsy often report having a lower quality of life and a higher use of health care resources compared to other chronic conditions. Ultimately, more research is needed to answer the unanswered questions related to the cause, diagnosis, and treatment of seizures and coexisting conditions (eg, depression, anxiety).
“As a neurologist, I see the impact of epilepsy every day. This list helps me understand my patients’ needs and what is most important to them,” said Dr. Ana Suller Marti, Co-Chair of the PSP Epilepsy Steering Committee and Neurologist at Western University.
The main consensus priority question centered on 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 key to finding the right treatment for the right person. In addition, more research on genetic markers will improve knowledge and help guide decisions about the prevention, prediction, diagnosis and treatment of epilepsy and seizures. said Dr. Elisabeth Simard-Tremblay, Montreal Children’s Hospital.
Billie Jean Colborne, a participant in the PSP workshop of Gander, Newfoundland, said: “After seeing my dad with epilepsy, I was diagnosed at the age of 42. I can’t work and my friends have distanced themselves, but I keep pushing because he has to. have a better way. There must be answers: why some suffer more than others, what causes it 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 truly 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 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-epileptic drugs, the causes of the side effects of these treatments and how can side effects be prevented?
- What are the long-term impacts of seizures on a person’s brain, as well as their overall health and development?
- How to reduce the risk of SUDEP (sudden unexpected death in epilepsy) in people with epilepsy?
- What is the most effective testing protocol for determining the cause of seizures and / or a diagnosis of epilepsy or other seizure disorders and for reducing the time to diagnosis?
- What are the changes in the brain, at the cellular level, that lead to the development of seizures?
- How effective is surgical treatment for adults and children with seizures or epilepsy?
- What are the causes of 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 have seizures?
- Apart from antiepileptic drugs and some brain damage, what causes behavior changes in people who have seizures? What is the best way to deal with behavior problems?
- How effective (i.e., how effective in reducing seizures) is adding a second anti-epileptic drug compared to switching to another anti-epileptic drug? How can we determine which combinations of anti-epileptic drugs are effective?
EpLink – The Ontario Brain Institute’s epilepsy research program is dedicated to reducing seizures and improving the quality of life of people with epilepsy through research. We have more than 25 researchers and more than 30 collaborators from eight universities and hospitals across Ontario work 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 representatives of community epilepsy agencies to bring our research to the community. We also host research conferences and public education events to raise awareness about epilepsy. For more information on 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 patients and the economy. Our collaborative ‘team science’ approach fosters brain research, commercialization and care by connecting researchers, clinicians, industry, patients and their advocates to improve the lives of people with disorders. cerebral. 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 on the most important treatment uncertainties affecting their particular interest, in order to influence the prioritization of future research in this area. For more information, visit the JLA website (www.jla.nihr.ac.uk).
SOURCE Ontario Brain Institute
For further information: Rebecca Woelfle, Project Coordinator, Epilepsy PSP, Communications Manager, EpLink, [email protected], 416-978-6381, www.eplink.ca; Allison GarberConsultant, Ontario Brain Institute (OBI), [email protected], 902 221 5254