New open data sheds light on the research priorities of the Canadian epilepsy community

The Ontario Brain Institute (OBI) has released its latest open set of data focusing on the most pressing concerns of patients, their families and health professionals about epilepsy and seizures. These data are now available on Brain-CODE, OBI’s neuroinformatics and analytics platform.

This initiative represents the first systematic evidence of patient- and clinician-centered research priorities for epilepsy. Sharing the results of this priority-setting exercise on Brain-CODE provides the opportunity for researchers and funding agencies across the globe to align their agendas with the values and needs of the epilepsy community in order to improve clinical outcomes and quality of life for people living with epilepsy and seizures.

“An important part of doing research that matters is by starting with the right questions,” said Dr. Tom Mikkelsen, President and Scientific Director of the Ontario Brain Institute. “This is why engaging the community is so important to OBI. We want to ensure the research we support is done in partnership with the community it is meant to help. As a provincially funded organization that makes science matter, we work with researchers, clinicians, industry, and patients to ensure that Ontario’s neuroscience excellence is translated into real world impact.”

The information was gathered via national surveys over a two-year process through a collaborative effort with OBI, its epilepsy research program, EpLink, and the James Lind Alliance, as part of a Priority Setting Partnership (PSP) initiative to identify the Top 10 List of research priorities the epilepsy and seizure community want answered and to give a stronger voice to Canadians living with epilepsy. This dataset includes over 2,100 questions from more than 500 people from across Canada.

“As a neurologist/epileptologist, I see the impact of epilepsy every day,” wrote Dr. Ana Suller-Marti, Chair of the PSP Steering Committee and a neurologist at Western University, in a report about the PSP. “This list helps me to understand the needs of my patients and what is most important to them. These Top 10 unanswered questions, if addressed, will help people with epilepsy to live their lives to the fullest while researchers continue to search for more effective treatments and strategies.”

Facilitating the sharing of this data through Brain-CODE was the obvious next step, as the platform was built to foster more seamless collaboration and data sharing across the globe in order to speed-up the research that will improve the lives of people living with brain disorders – such as epilepsy.

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). Learn more about this Top 10 List, an important first step in aligning epilepsy research with the priorities of patients, their families.

Explore the epilepsy dataset on Brain-CODE.