EpLink – the Epilepsy Research Program of the Ontario Brain Institute (OBI), in collaboration with the James Lind Alliance and the Ontario Brain Institute, announced the launch of an online survey to work directly with patients, caregivers, and clinicians to better identify research priorities around epilepsy and seizures.
This project, also known as a Priority Setting Partnership (PSP), is the first such initiative for epilepsy in Canada. The PSP is being led by EpLink, and funded by OBI, in a partnership with the James Lind Alliance, a UK-based non-profit that sets health research priorities. The outcome of this PSP will be a “Top 10” list of research questions that will serve to guide researchers and funding agencies. Patients, caregivers and clinicians will use the survey results to compile this list and prioritise which questions are the most important for research to address.
“There are still many aspects of epilepsy and seizures that we don’t fully understand, which can pull research in many different directions,” said Dr. Jorge Burneo, Chair of the Epilepsy PSP Steering Committee and Epileptologist at Western University. “By collecting the questions of people in the epilepsy community, we can focus our work on answering the questions that are the most meaningful to the people who benefit from our research, which as a result will serve to help clinicians provide better care, and improve the lives of patients and their caregivers.”