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Research priorities for people living with epilepsy: The findings so far

To accelerate progress in epilepsy research, we need to know we are directing our efforts to where they will have the most impact. Our SHAPE NETWORK questions were designed to identify research priority areas for people living with epilepsy. 

So farhundreds have already completed our four-question survey, helping us identify some consistent early themes. But there is strength in numbers, and in the fight against epilepsy, we need to work together. If you haven’t already, you can still join our SHAPE NETWORK here. We particularly want to hear from more men, older people, and people living with comorbidities. Together, we can shape the future of research. 

The findings so far 

Top three priorities for future research:

1. Reducing side effects from drugs 
2. New and improved treatment options 
3. More effective antiepileptic drugs

The top four ways epilepsy has interrupted lives:

1. Employment 

Epilepsy has a huge impact on people’s employment and career options. Examples include being unable to work, discrimination and being unable to pursue their chosen career due to their condition. 

2. Sleep 
A high number of respondents shared how their condition caused interruptions to sleep, with a significant proportion experiencing insomnia. 

3. Mental Health 
Responses to our questionnaire are providing strong evidence on the impact of epilepsy on mental health. Many respondents described their experiences of depression and anxiety.

4. Daily life 

Interruptions to daily life were varied and broad. Responses range from not being able to drive, to requiring constant care. It is clear epilepsy has a significant impact on people’s ability to plan and control their day. 

When asked what one thing would be life changing… 

35% of people said that medications with fewer side effects
22% of people said that preventing epilepsy and being seizure-free  

Until that life changing day becomes a reality…

many people with epilepsy said being able to monitor or predict seizures would greatly help their quality of life until they can be seizure-free 

When asked what proportion of funds we should allocate to clinical research versus lab-based research… 

52% said they wanted funds to be allocated to clinical research that provides help for today
48% said they wanted investment in lab-based research that provides help for tomorrow

Do you agree? Has epilepsy interrupted your life choices? What one thing would be life changing for you? What are YOUR research priorities? 

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