Background

Early-onset epilepsy can sometimes be linked with other conditions that affect how a child grows, such as ADHD, autism, or challenges with learning and language. These can have a big impact on a child's everyday skills, physical health, and overall quality of life.

We know that when seizures start at a very young age, it can play a role in a child's later development. However, most research in the past has only looked at these links after a child has already been diagnosed with a developmental difficulty. New evidence suggests that the way the brain develops in the first two years of life can actually help us predict these outcomes much earlier. Because of this, it is crucial that we follow children from the time of diagnosis with epilepsy so we can understand their needs and provide the right support as soon as possible.

Objectives

Beyond the science, we want to make sure our work truly helps families. We are speaking with the community to see how helpful and "family-friendly" early support programmes would be for children with epilepsy. By working closely with parents and the community, we aim to shape research that leads to better care. Ultimately, this work will pave the way for new ways to support children early on and give us a reliable way to see how well those supports are working—all with the goal of improving the long-term quality of life for every child.

Assessments

This study will be assessing babies with epilepsy at multiple time points across early development, starting around the time of their first seizure, then again at 10, 14 and 24 months. You can read more about the eligibility criteria for taking part here

And we are glad to announce that we will be starting our next phase of study – the preschool phase! In this phase, we will be combining that early information with new, preschool-friendly assessments of development, behaviour, and brain function for children aged 3 to 5. This helps us to see how early epilepsy features are related to a child's behaviour and skills as they reach preschool age. Besides, it also helps identify the exact age when "brain-based clues" appear that might predict how a child will develop later on and understand how a child's medical history and their brain development work together to shape their growth during these early years.​

All activities and tasks have been selected to be non-invasive and easy to tolerate in babies and young children. We will be asking parents to complete a number of online questionnaires and interviews related to their baby's development, covering topics such as behaviour, sleep and language. Following this, we will be conducting three home visits to participating families' homes to complete play-based and neurocognitive tasks. This includes an EEG (recording brain activity) and eye-tracking activity to learn more about babies' brain development, and how they attend to and perceive things in their environment.

See below for a flow chart of the planned activities we will complete across the study: