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Get Involved in Research

Find out more about how you can take part in studies to improve understanding of Dravet Syndrome and, if you're a researcher, discover what support we can provide.

Take part in research

By taking part in our research, you’ll help to improve understanding of Dravet Syndrome and find more therapies to benefit everyone affected by the condition.

Taking part can be anything from talking about your experience in a focus group, answering survey questions about living with Dravet Syndrome, or trialling new devices.

Current opportunities on this page (click on the project to read more):

For any questions about opportunities on this page, please contact [email protected]

 

Measuring what matters in clinical trials

You are invited to complete the survey below as it will enable us to enhance the design of clinical trials for new treatments for people with epilepsy.

https://redcapsurveys.uhbw.nhs.uk/surveys/?s=MCCY4YCCLE34MML9

We would like to learn what matters most to people living with epilepsy when taking part in epilepsy research for new treatments. Researchers often look at things like reductions in seizure numbers, but we know there’s much more to life with epilepsy for example better mood, fewer hospital visits or improved quality of life.

We have designed a survey to look into what matters most to you when trying a new treatment.

You can take part if you are:
• An adult living with epilepsy, or
• A parent, carer, or family member of a child or adult with epilepsy

The survey takes about 10 – 15 minutes. Your answers are anonymous.

If you have any questions regarding this survey, please do not hesitate to get in touch. You are under no obligation to take part, but if you do, your answers will help us to plan better studies and choose outcomes that are truly meaningful for people with epilepsy and their families.

 

How brain and behaviour develop in young children with epilepsy

The Brain Development in Early Epilepsy (BEE) study is tracking children under 6 years
old with and without epilepsy to investigate how brain and behaviour develop in childhood.

You can read more about the study at https://beestudy.co.uk.

As part of this study, children undergo home-friendly electrical brain activity monitoring
(EEG), eye tracking, and standard assessments to measure behaviours relating to autism,
ADHD, language disorder, and intellectual disability. The study is open to any child under 6
years old with a diagnosis of infantile spasms and/or focal seizures in the first year of life. If
a child has a possible diagnosis or a pending diagnosis, they may also take part.


If your child is eligible and you are interested in taking part, please
email [email protected] or call +44 (0)7442960945.

 

Understanding the impact of climate change on people with Dravet Syndrome
We are hearing more and more from people with epilepsy that changes in weather (for example in heatwaves) are making life harder. Due to the effects of climate change, we know that heatwaves and other extreme weather events are likely to get worse. We would like to learn more about the lived experiences of people with Dravet syndrome and their families and carers. We hope that this information will help us to improve safety for people affected by Dravet syndrome during adverse weather events.
It would be very helpful if you could spend some time doing this survey and telling us what you think of it. The survey should take 10-15 minutes to do (please note, depending on whether you are answering for yourself or for someone you care for, the question numbering will differ, but the total number of questions is the same whichever part of the survey you take). If you choose to take the survey, we hope you will be able to answer all the questions. Your answers are anonymous. They will not be linked to your name and they will stored be in a safe place.

If you have any questions regarding this survey, please do not hesitate to get in touch. You are under no obligation to take part, but if you do, your answers will help us to plan better for impacts due to climate change.

The SCN1A Horizons Natural History Study

The SCN1A Horizons Natural History Study aims to map how Dravet Syndrome presents and changes across the lifespan by following individuals over time. The study is recruiting participants across the UK and is open anyone with a confirmed SCN1A-related epilepsy. The study currently includes around 150 patients and is looking to increase representation within the 0-2 years and 17+ years age bracket.

 

If you would like to participate, please contact the study team on [email protected] (including the name of your neurologist and hospital).

 

Share your experience of treatments in caring for someone with an epileptic condition

Click here to email IQVIA to express your interest

 

How parents of children with Dravet Syndrome experience caregiving 

The purpose of the study is to explore how parents of children with Dravet Syndrome experience caregiving, including the challenges they face, the coping strategies they use, and the factors that support psychological resilience. This research is being conducted as part of an MSC Psychology dissertation project.

You can take part if you are a parent or primary caregiver of a child diagnosed with Dravet Syndrome and are aged 18 years or older.

Take the survey here

 

Evaluating sleep in people affected by epilepsy

The ESPER study explores how sleep is experienced by people affected by epilepsy in different ways; including people living with the condition, family members and carers, and those who work with patients or epilepsy organisations. Through a short questionnaire and optional follow-up interviews, we hope to better understand how epilepsy shapes sleep across this wider community, an area that has received relatively little research attention.

ESPER Study Questionnaire v2 – Fill in form

Who can complete the survey – anyone aged 18+ with English proficiency.
How long (roughly) the survey will take to complete – approx. 15-30 mins.
What is the deadline for completion – Sunday 5th July 2026.