Epilepsy Priority Setting

Listening to the community's voice to shape the future of epilepsy research

Canada’s epilepsy community has spoken, and the result is a Top 10 list of research priorities that they want answered about epilepsy and seizures. This initiative was led by our epilepsy research program, EpLink in collaboration with the James Lind Alliance and the Ontario Brain Institute, over a two-year process which saw Canadians submit and prioritize their most pressing questions related to epilepsy and seizures. We received over 2000 questions and had over 500 people from across Canada prioritize choose their top 10. The final Top 10 list was reached by consensus at a virtual workshop involving people living with epilepsy or seizures, their families, and health professionals.


view the top 10 priorities read the report

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Gather your questions

The first stage is to gather uncertainties, or unanswered questions, regarding epilepsy and seizures. This involves promoting the survey and having the community submit their questions on causes, diagnosis, treatment and managing day-to-day life. The survey will be open until February 29, 2020.

We have completed this stage!

Analyze responses and check the evidence

Once the survey is closed, the submissions will be analyzed by an Information Specialist. This specialist will identify question themes and review published scientific papers to see if there are answers to the submitted questions. Questions that do not have answers will be labelled as “uncertainties” and will be brought forward to the next stage for community prioritization in a second survey.

We've completed this stage!

Ranking the priorities

In this second survey, community members will have the opportunity to rank the identified uncertainties. This ranking will determine which uncertainties the community thinks are most important for research to address.

We've completed this stage!

Final priority setting workshop

The final priority setting workshop will take the questions identified as priorities from the second survey and rank them in order of importance. Stakeholder representatives from the patient, caregiver, and healthcare provider communities will work together to collectively decide the priority order, focusing on the “top 10” questions they want research to address.

This workshop is slated to take place April 2021.

Share the priorities

Once the top 10 research priorities have been decided, we will publish the list and work with our partners to share the list with researchers and funding agencies across Canada. We will also publish a report on the Partnership to share the process and the priorities.

The top 10 questions and report will be available in Spring 2021.

How the Priority Setting Partnership Works

Gather your questions

The first stage is to gather uncertainties, or unanswered questions, regarding epilepsy and seizures. This involves promoting the survey and having the community submit their questions on causes, diagnosis, treatment and managing day-to-day life. The survey will be open until February 29, 2020.

We have completed this stage!

About Epilepsy

What is epilepsy?

Epilepsy is a brain disease that causes unprovoked, repeated seizures. A seizure occurs when the normal electrical balance in the brain is lost. The brain’s nerve cells misfire, and the result is a sudden, brief, uncontrolled burst of abnormal electrical activity in the brain.

Visit our page on epilepsy here to learn more.

What about other conditions that cause seizures?

People may experience seizures as a result of a co-existing disorder. Some examples include:

  • Rett Syndrome
  • Cerebral Palsy
  • Down Syndrome
  • Tuberous Sclerosis
  • Neurodevelopmental Disorders

We welcome questions related to the management of these conditions in relation to having seizures, as well as causes, treatment, and managing day-to-day life.

Where can I find more information on and support for epilepsy?

If you are looking for more information on epilepsy and seizures, or need to access extra support, we encourage you to reach out to our partner organizations:

Partners

Patient Community Representatives

Terry Boyd (patient advocate), Deirdre Floyd (Canadian Epilepsy Alliance, Epilepsy Association of Nova Scotia), Joanna Kapusta (Epilepsy Toronto), Cheryl Mendes (Epilepsy Toronto), Kristi Nylen-Burns (patient advocate), Mary Secco (Epilepsy Southwestern Ontario)


Clinical Representatives

Ana Suller-Marti (Chair, London Health Sciences Centre), Jerry Chen (University Health Network), James Deutsch (University of Toronto), David Gold (University Health Network), Colin Josephson (University of Calgary), Marcus Ng (University of Manitoba)


EpLink & the Ontario Brain Institute

Eplink: Amaya Singh, Rebecca Woelfle

OBI: Carla Arasanz, Jordan Antflick, Rachel Chepesiuk


James Lind Alliance

Katherine Cowan

This partnership is brought to you by

  • Ontario Brain Institute

    The Ontario Brain Institute (OBI) is a provincially-funded, not-for-profit research institution seeking to maximize the impact of neuroscience and establish Ontario as a world leader in brain research, commercialization and care. OBI is financially supporting this priority setting partnership, as well as helping to facilitate the process.

  • EpLink

    EpLink is a partner research program of OBI, dedicated to reducing seizures and improving the lives ofr people with epilepsy through research. We work with dozens of collaborators from eight universities and hospitals across Ontario to improve drug, diet and genetic therapies, surgical outcomes, brain monitoring and modulation, and quality of life for people with epilepsy. We work with industry partners, patients, caregivers, and community epilepsy agency representatives to bring our research to the community. We also host research talks and public education events to raise epilepsy awareness.

  • The James Lind Alliance

    The James Lind Alliance is a UK-based non-profit coordinated by the National Institute of Health Research (www.nihr.ac.uk). Its aim is to provide an infrastructure and process to help patients and clinicians work together to agree which are the most important treatment questions affecting their particular interest in order to influence the prioritisation of future research. The study will be conducted using the methodology set out by the James Lind Alliance. One of their independent advisors will ensure the process is fair, transparent, and representative of each group involved.