Get Involved in Research

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):

• Dravet Syndrome UK’s Priority Setting Project
• Designing a study to monitor breathing patterns during and after seizures
• SCN1A Horizons Natural History Study
• Quality of life and other outcomes in children on the ketogenic diet
• Evaluating sleep in people affected by epilepsy

Dravet Syndrome UK’s Priority Setting Project

We are asking families to share the unanswered questions that matter most to them; we want to hear families’ questions, in their own words, about these areas:

• Challenges beyond seizures
• Life as an adult with Dravet Syndrome
• Impact on the whole family

Share the questions that matter most to your family.

Over the next few months, Dravet Syndrome UK will also be running small group discussions to explore research priorities in more detail. If you’re interested in taking part, please register here or contact us at [email protected]

Can a small biosensor attached to the chest by an ECG patch detect breathing patterns, including stopping breathing, during and after epileptic seizures?

Prof. Sameer Zuberi is looking at whether a small biosensor attached to the chest can detect breathing patterns, including stopping breathing, during and after seizures. You can read more about this study here.

As part of this project, the device will be trailed on children living with Dravet Syndrome. Prof. Zuberi’s team would like to speak to a small group of parents of children living with Dravet Syndrome in an online workshop about the study design. There will be reimbursement for involvement. If you are interested in joining this workshop, please email [email protected].

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).

Understanding what matters most: Caregivers and professionals views on quality of life and other outcomes in children on the ketogenic diet.

Are you a caregiver or professional supporting a child on the ketogenic diet for seizures? We need your valuable, lived experience for this research study

Join an online focus group (60–90 minutes) to share your views on what truly matters:

• Quality of Life and Social Functioning Outcome: Alertness, Concentration, and Behaviour.

Your participation will directly inform the development of a new outcome measurement questionnaire, ensuring it reflects real-world experiences for children on the ketogenic diet.

• Who: Caregivers (parents/guardians) & Professionals (healthcare, schools, social care, research, charity)
• What: 60–90 minute online focus group (secure video call)
• When: December 2025 – January 2026
• Why: Help create better tools for measuring outcomes for children on the Ketogenic Diet.

Ready to share your insights?

Complete this survey https://app.onlinesurveys.jisc.ac.uk/s/plymouth/kdfocus

Or contact Zoe Simpson for more details: [email protected]

Study approved by the University of Plymouth. Ethics Reference: [PEOS 6275]

Evaluating sleep in people affected by epilepsy

Dr. Felix Chan, at the University of Aston has launched the Evaluating sleep in people affected by epilepsy research (ESPER) study for participant recruitment. This study aims to measure sleep in adults affected by epilepsy.

For this study, Felix wants to hear from adults affected or unaffected by epilepsy. In defining people affected by epilepsy, they include adults living with epilepsy, adult caregivers of people with epilepsy, adult bereaved of loss of people with epilepsy, adult supporting people with epilepsy, adult working with epilepsy charity, etc. So, if you are part of the epilepsy community, we would love to hear from you!

Please fill in the registration form here to register your interest: Participant Interest Form for ESPER Study – Fill out form.