Epilepsy Priority Setting

We need your voice to shape the future of epilepsy research

The Ontario Brain Institute, EpLink and the James Lind Alliance have come together to organize a Priority Setting Partnership (PSP) on epilepsy. This Partnership aims to shape future research on epilepsy and seizures by bringing together patients, their caregivers and health care providers to identify and prioritize unanswered questions around treatment and care to present to researchers and funders.

We first conducted a national survey asking people to share their questions about epilepsy and seizures they wanted answered by research. We summarized the submissions we received from over 500 people across Canada into research questions. We then checked these questions against existing scientific evidence to see which questions still need to be answered. We are now asking Canadians to pick which of these questions are most important to answer.

For this step, we are asking you to pick up to 10 questions you think are a priority for epilepsy and seizure research to address. We are looking for the perspectives of patients, family members and caregivers, and clinicians and allied healthcare providers across Canada.

The interim priority setting survey is now closed. Thank you for your interest. Please subscribe below for updates on the Priority Setting Partnership to hear about the outcomes of the survey.

Please subscribe to hear future updates on the Partnership and how you can contribute

About the Survey

Who should take part in this survey?

People living with epilepsy or who experience seizures as part of a co-existing disorder, their families, their caregivers, and healthcare professionals working with people living with epilepsy.

What do I need to do?

This survey involves picking up to ten(10) options from a list of 43 questions that are related to causes or diagnosis, treatment, management of day-to-day life or management of co-existing conditions that you want to prioritized to be answered by research. These questions were identified as unanswered through an evidence check of the epilepsy and seizure research to date. By unanswered questions, we mean questions where there are no known reliable answers found by research so far. Simply select the questions you feel are most important to answer. There will also be a few questions to help us understand who is completing the survey and make sure we hear from as many Canadians and gather as many perspectives as possible.

We also encourage you to share the survey with anyone who you think will be interested in participating. Let us know if you would like to be involved in promoting the survey.

Why should I take part in the survey?

If you have epilepsy or seizures, or care for someone who does, you have unique insight into the questions and topics that matter most. If you are a health care professional, you may be wondering how best to care for your patients or clients. This is your chance to influence epilepsy research so that it focuses on areas that will have the greatest impact on health and quality of life for people with epilepsy.

What will you do with the responses?

We will look at which questions were most selected by patients and families and rank them against those selected by health professionals to create a top 15 list of questions. We will then bring forward this list to the final priority setting workshop. This workshop will have individuals living with epilepsy or seizures, care partners and health care providers come to a consensus on a top ten list of the most important questions on epilepsy and seizures for research to address.

If you are interested in taking part in the final workshop in April, please complete and submit an Expression of Interest form, listed above.

I am feeling distressed - can you help?

If you are in emotional distress and need someone to talk to, please contact one of the following crisis lines:

  • Canada Suicide Prevention Service: toll-free 1-833-456-4566, French and English, available 24/7
  • Crisis Text Line (free service for youth): text TALK to 686868 for English speaking crisis responders; text TEXTO to 686868 for French speaking crisis responders
  • KidsHelpPhone (for youth ages 20 and under): 1-800-668-6868 online or on the phone
  • First Nations and Inuit Hope for Wellness: 1-855-242-3310 available 24/7 or online chat at https://www.hopeforwellness.ca/
  • For more information on local crisis support, please visit here

Please see below for resources on epilepsy information and support.

If you have any further questions about the survey or the Partnership, please contact Rebecca Woelfle, JLA Project Coordinator, at the following email: rwoelfle@eplink.ca or phone number:519-494-8817

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:

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.