SUDEP Action shares risk studies at ILAE Conference

Last week, SUDEP Action exhibited research findings at the British annual conference of the International League Against Epilepsy (ILAE) between 8^th-10^th October. Trustee Rhys Thomas, who is also president of the ILAE British branch, was chairing at the conference and fellow Trustee Ley Sander presented a keynote talk on the ‘social determinants of epilepsy risk’.

The ILAE is the premier professional association of clinicians working in the field of epilepsy. The organisation’s mission is to ensure that health professionals, patients and their care providers, governments and the public have the education and resources that are essential in diagnosing and treating people with epilepsy. Its goals are to advance knowledge about epilepsy, promote research, education and training and to improve the treatment and care of epilepsy patients.

The studies were shared through display posters, ensuring SUDEP Action’s voice was heard within academic and clinical communities, whilst also raising our charitable profile as a research-delivering organisation with expertise in our field. Study findings had themes around SUDEP prevention, learnings from deaths, pregnancy and SUDEP, and the patient experience of MHRA medication regulation. The charity is grateful for the involvement of collaborating professionals who worked with us in various capacities in making these research projects possible.

The objectives of the posters were to share more about the work we do at SUDEP Action and promote our involvement in future research. Posters presented were:

• A System-Wide Approach to SUDEP Prevention: Implementation of a Safety Checklist and Workforce Training Programme in South Yorkshire
• Learning from Prevention of Future Death Reports in Epilepsy
• The patient voice: valproate, topiramate and MHRA regulation
• Network structure of epilepsy and SUDEP-related risk in a real-world digital self-assessment cohort
• Characteristics and themes of pregnancy-related SUDEP: a registry-based case series using the Epilepsy Deaths Register

Jane Hanna and the work of Epilepsy Bereaved (now SUDEP Action) was also recognised by Lina Nashef who won the Excellence in Epilepsy Award this year.

SUDEP Action Research Manager, Ben Donovan, who attended the conference, said: “The ILAE British Branch Annual Scientific Conference is a fantastic opportunity to learn about what others are doing at the cutting edge of epilepsy research, showcase our own research, and to create cross-sector networks of professionals working towards shared goals.”