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.

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. We’re looking to hear what questions you want answered about causes or diagnosis, treatment, managing day-to-day life or managing co-existing conditions related to epilepsy. Your questions will help direct researchers towards finding solutions that better reflect your needs and will have the greatest benefit to you.

The first step is to collect your unanswered questions. By participating in the survey, you will have the opportunity to share the questions you want answered about your experiences living with epilepsy or seizures, or providing care to someone who does. We are looking for the perspectives of patients, family members and caregivers, and clinicians across Canada.


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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 submitting your unanswered questions related to causes or diagnosis, treatment, management of day-to-day life or management of co-existing conditions that could be answered by research. By unanswered questions, we mean questions that there is no known reliable answer found by research so far. You do not have to check if there is no answer in research literature to your question. Simply submit your questions to which you have not been able to find an 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?

All the questions submitted will be reviewed and checked against existing research to determine if answers are available to these questions, or if they are true uncertainties. For questions that can be answered by existing research, we will pull together this information and share it with the community. The questions that have not been answered by research will be brought forward to a second survey where you can rank which questions you want to be prioritized. You can learn more about the next stages in this Partnership and how you can stay involved below.

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/
  • If you or someone you know is in immediate danger, please call 911
  • 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: 416-978-6381

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 late January 2020.

We are currently in this stage! Submit your questions now.

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.

This stage will take place early 2020.

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.

This survey will be available on this webpage in Spring 2020.

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 Summer 2020.

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 fall 2020.

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 late January 2020.

We are currently in this stage! Submit your questions now.

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

Jorge Burneo (Chair, London Health Sciences Centre), James Deutsch (University of Toronto), Paolo Federico (University of Calgary), Evan Lewis (Neurology Centre of Toronto), 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.