There is a well-established link between epilepsy and neurodevelopmental conditions such as ADHD, autism, and dementia. What’s more, seizures and the treatments used to control them can severely affect a person’s memory, their ability to focus, and how they think.
These strong links are the reason why ‘Neurodevelopment’ is one of the Epilepsy Research Institute’s key research themes.
But measuring the development of the brain, and the impact that epilepsy has on it, is complex. There’s not a simple blood test you can have, or something to look for down a microscope.
This matters because it makes it more difficult to monitor people for changes to brain function, and how they respond to new treatments. So, in clinical practice, it could be unclear whether someone’s getting better or worse. And in clinical trials, it can be difficult to assess whether a new drug or a surgical procedure is really making a difference.
To address this issue, the Epilepsy Research Institute organised a meeting in May 2025 to bring together scientists involved in our Neurodevelopment task force.
At the meeting, the scientists discussed the key challenges relating to assessing neurodevelopment, brain function, and behaviour.
First, there are so many different measures of brain function. Experts presented updates on their research using EEG, brain imaging, developmental tests and complex analysis of blood. But what are the right tests to use? And are they right for the group being studied?
Age is a particularly important consideration. The brain tests that are possible for adults are often unsuitable for babies and children. This means researchers need to find the right measures for each age group and understand how results can be accurately interpreted across development.
Dr Charlotte Tye, who has previously received funding from the Epilepsy Research Institute, talked at the meeting about some of the tests that she and her team have been using to measure visual attention and social interaction in babies as young as 3 months’ old, with and without epilepsy. Her research focuses on identifying early developmental markers that may be linked to later behavioural outcomes that can co-occur with epilepsy.
Another related issue is around the ‘trajectory’ of brain development. How do our brains develop as we age, and how does epilepsy affect that?
For many measures of brain function, research has given us snapshots of the variation between individuals at a certain age. But we lack a joined-up picture of how our brain changes over time. Research is needed to develop a long-term or ‘longitudinal’ view of brain development. Without this, it’s hard to know whether we are seeing someone’s typical developmental pathway, or whether it reflects the impact of epilepsy or its treatment. Once we understand how epilepsy shapes development, we can work out when interventions will be most effective.
This issue touches on an important question: what is ‘normal’ development anyway? Our brains all work in different ways, so when comparing brain function, what are the key features we should look for? Understanding both typical variation and the impact of epilepsy is critical for developing accurate measures.
Finally, we also need to account for the different factors that could influence test results. For example, a simple test of a person’s ability to think might be affected by stress, tiredness, or if they’ve recently had a seizure. These kinds of tests are not robust in the same way that measuring someone’s height is, for example. So, given the potential for variability, we need research to help us understand how to get the most value from tests.
To better understand the link between epilepsy and neurodevelopment, we must find the most reliable and appropriate methods to measure brain function and behaviour. It was the consensus at the meeting that the area is very complex, with no easy answers. It seems likely that a combination of different approaches will be needed to give meaningful insight. Achieving this is going to require more research, and increased collaboration between scientists, clinicians, and people affected by epilepsy.
This area is a priority for us at the Epilepsy Research Institute. The problem may be challenging, but by bringing the right people together, and investing in high-quality joined-up research, we will be able to work through this complexity and develop the tools needed to enable effective treatments and interventions for people with epilepsy.
Donations and fundraising are crucial ways of supporting our work; the work of our Neurodevelopment theme continues, thanks to our supporters.
