The Ontario Brain Institute’s (OBI) epilepsy research program (EpLink) has been working to better understand the questions Canadians have about epilepsy and seizures and how to direct research to answer these questions.  The  questions could be about causes or diagnosis, treatment, managing day-to-day life or managing co-existing conditions related to epilepsy.

Co-existing conditions related to epilepsy include:

  • Rett Syndrome

  • Cerebral Palsy

  • Down Syndrome

  • Tuberous Sclerosis

  • Depression, anxiety, or other mood disorders

  • Neurodevelopmental disorders

If you have epilepsy or experience seizures, or if you care for or work with someone who does, we want your help in setting the priorities for epilepsy research.  Your answers to the survey (link found below) will help researchers and research funding organizations better identify what is important to people living with epilepsy and/or seizures and incorporate their priorities when planning future projects.

This priority setting process follows the methods of the James Lind Alliance (UK) and is being funded by OBI. It is led by a steering committee that includes patient advocates, patient advocacy group representatives, clinicians, and healthcare professionals working with persons who have epilepsy and/or seizures.

The survey process is now in the 2nd phase.  By clicking on the link below, you will find a series of questions that were derived and collated from responses gathered during the 1st phase.  Choose the top 10 questions you would like to see further researched.  It is your opportunity to lend your expertise from your own personal/professional experience, and to have your say in setting epilepsy research priorities.

Please complete this short survey at: http://www.braininstitute.ca/epilepsy-psp

This survey is open from January 7, 2021 to March 7, 2021 – pick your priorities today!

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