Do you have questions about epilepsy that could be answered by research? If so, we want to hear from you! EpLink is excited to announce the launch of a national online survey to work directly with patients, caregivers and clinicians to better identify research priorities around epilepsy and seizures. We have teamed up with the Ontario Brain Institute and the James Lind Alliance to bring together patients, caregivers and healthcare providers to agree upon a “Top 10” list of research priorities for epilepsy.
This priority setting partnership (PSP) is guided by a Steering Committee consisting of people with epilepsy, caregivers and clinicians from across the country. We want to hear your questions around cause, diagnosis, treatment or management of epilepsy. The results will help to shape the epilepsy research agenda in Canada by allowing researchers to better understand the needs of people living with epilepsy and seizures.
“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, EpLink Co-Director, 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.“
You are eligible to complete the survey if you are:
- A person with epilepsy or seizures
- A caregiver, friend or family member of someone with epilepsy or seizures
- A health care provider working with people with epilepsy
- A Community Epilepsy Agency representative
No one knows epilepsy better than the people who live and work with it every day. Let us know what matters to you!
To complete the survey or to learn more about this partnership, please visit braininstitute.ca/epilepsy-psp (survey is available in French and English)
Read the press release here