The Ontario Brain Institute’s (OBI) epilepsy research program (EpLink) is looking to better understand the questions Canadians have about epilepsy and seizures. These 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 this survey 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 goal of this project is to better understand the questions Canadians have about epilepsy and seizures. These questions may relate to etiology or diagnosis, treatment, managing day-to-day life or comorbidities related to epilepsy. Your questions will help 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.
Example questions include:
- How can we predict which treatment will work best?
- Can psychotherapy improve quality of life for people with epilepsy?
- Why are children with developmental disorders at higher risk for epilepsy?
This is an opportunity for you to lend your expertise from your own personal/professional experience, and have your say in setting epilepsy research priorities.
Please complete this short questionnaire at: http://www.braininstitute.ca/epilepsy-psp
This survey is open from October 2019 to end of February 2020– contribute your voice today!