National epilepsy survey aims to identify research priorities

The Ontario Brain Institute’s (OBI) epilepsy research program (EpLink) wants input from Canadians living with or caring for people with epilepsy or seizures to set the priorities for epilepsy research. This initiative aims to identify a list of Top 10 questions that people living with epilepsy, their family and friends, and health care professionals jointly agree are the most important for research to address. Your rankings in this survey will help influence epilepsy research so that it focuses on areas that improve the care and quality of life of people with epilepsy.

In the first survey of this initiative, participants across Canada submitted questions on epilepsy and seizures. From these responses, a team of information specialists checked the questions submitted by the epilepsy community against existing research evidence. Specialists then identified a set of uncertainties—questions that do not currently have sufficient answers by research.

For the second survey, health care professionals are encouraged to select up to 10 research questions you feel are most important to address that will improve your practice and your patients’ lives. The results of this second survey will inform the Top 10 list to be compiled in the final phase of this initiative, which will be published and shared with funding organizations and researchers to initiate research into the topics identified through this process. This priority-setting process follows the methods of the James Lind Alliance (UK) and is being funded by OBI.

Please take 10 minutes to pick which questions you want prioritized for epilepsy and seizure research, at: (available in English and French).

You can also help this initiative understand the needs of health care professionals by:
•    Sharing this survey with your team, colleagues, and others.
•    Sharing this survey with support groups or professional groups you have connections with.
•    Raising awareness via your newsletters, webpages, blogs, social media (follow the Twitter accounts @EpLinkON, @OntarioBrain, @LindAlliance).

Finally, EpLink and OBI are also looking for people to take part in the final workshop.

Eligible participants for this workshop include:
•    Epileptologists
•    Neurologists
•    Nurses
•    Allied health professionals (e.g., occupational therapists, speech therapists)
•    Pediatricians
•    Neuropsychiatrists

If you are interested in attending this workshop, please complete the Expression of Interest form on this page:
—Rebecca Woelfle, MSc
Communications Lead, EpLink

This post has not been peer reviewed by the BCMJ Editorial Board.

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