Epilepsy Research Institute launches new UK and European network to improve understanding of anti-seizure medication safety in pregnancy

The Epilepsy Research Institute is pleased to announce the launch of the LIFETIME project, an ambitious new initiative that will bring together leading centres across the UK and Europe to investigate the long-term health and neurodevelopmental outcomes of children exposed to anti-seizure medications during pregnancy.

Each year, up to 50,000 people with epilepsy become pregnant across Europe. While anti-seizure medications are essential for managing seizures and protecting maternal health, there remains limited evidence about how exposure to certain anti-seizure medicines during pregnancy may affect children’s health and development in later life. This lack of information can create uncertainty for families and healthcare professionals when making treatment decisions.

The LIFETIME project aims to address this critical evidence gap by establishing a collaborative network of centres dedicated to the proactive health and developmental screening of large populations of children exposed to anti-seizure medications during pregnancy, with targeted enhanced investigations where indicated. The Epilepsy Research Institute’s role is to convene and connect this growing network, enabling researchers and clinicians across Europe to work together towards a shared goal: improving understanding of the long-term safety of anti-seizure medications.

Led by Dr Rebecca Bromley, Neuropsychologist and Senior Clinical Lecturer at the University of Manchester, the project will create the infrastructure needed to collect and analyse high volume, long-term follow-up data from mothers and children through developing standardised protocols and infrastructure that can be implemented across different European research initiatives. Participating centres will collect information from birth through to 2 years of age in this first phase, creating an invaluable resource for early detection.

Dr Bromley said:
“By undertaking proactive screening and investigation across several countries simultaneously, this initiative will reduce the time needed to understand longer-term child outcomes following an exposure. A key focus will be on systematically collecting data for treatments where current knowledge is most limited.”

Dr Hannah Pickard, Research Partnerships Lead at the Epilepsy Research Institute, said:
“Too many families are making important treatment decisions during pregnancy without access to the long-term evidence they need. By bringing together centres across Europe, the LIFETIME project will help build a stronger understanding of the impact of antiseizure medication exposure on child development and provide the evidence needed to support informed decision-making for people with epilepsy and their healthcare teams.”

Initially, the network will gather standardised data from up to 350 mothers and children, with a longer-term ambition to develop a comprehensive dataset involving approximately 2,000 families. By bringing together expertise and data from multiple centres, the LIFETIME project will enable researchers to investigate the impact of both established and newer anti-seizure medications, including treatments for which very little evidence currently exists.

For the first time, this coordinated international infrastructure will provide the capacity to explore longer-term neurodevelopmental outcomes at scale. The insights generated will help identify potential risks earlier, improve understanding of medication safety, and support better-informed treatment decisions for people with epilepsy before and during pregnancy.

By fostering collaboration across Europe and creating a sustainable network for data collection, the LIFETIME project represents an important step towards ensuring that families and healthcare professionals have access to the evidence they need to make informed choices about epilepsy treatment during pregnancy.