Sleep & Seizures

We are a clinically driven Special Interest Group (SIG) within ERN EpiCARE, dedicated to improving the understanding, assessment, and management of sleep disturbances in people living with rare and complex epilepsies across Europe. Our aim is to integrate sleep evaluation as a fundamental component of epilepsy care, both in adult and paediatric populations.

In addition to sleep comorbidities, the SIG is also committed to standardising how sleep assessment is used as a diagnostic and management tool in epilepsy. We aim to define shared criteria on when and how to record sleep to optimise the detection and quantification of epileptic activity across different ages and epilepsy syndromes.

Sleep and epilepsy are deeply interconnected: Sleep disorders are frequent comorbidities in developmental and epileptic encephalopathies (DEEs), meanwhile poor sleep can worsen seizure control, impair cognition and behaviour, and substantially affect quality of life for both patients and caregivers. Yet, sleep problems in epilepsy often remain under-recognised and undertreated due to limited screening and access to specialist expertise.

In addition to DEEs, several epilepsies, including Sleep-related Hypermotor Epilepsy (SHE), self-limited epilepsy with centrotemporal spikes (SeLECTS) and others, show a an intrinsic relationship with sleep underscoring the importance of structured sleep assessment for accurate diagnosis and management.

Our group aims to bridge this gap by promoting awareness, fostering collaboration between epilepsy and sleep medicine specialists, and supporting evidence-based approaches to diagnosis and management. A central goal of our SIG is to develop a shared European standardised protocol for the assessment of sleep disorders in epilepsy, to ensure consistency, quality, and accessibility of care across centres.

By embedding practical, harmonised sleep pathways into everyday clinical practice, we aim to improve patient outcomes, enhance quality of life, and advance the understanding of the complex interactions between sleep and epilepsy within the clinical and research community. This includes both the systematic assessment and treatment of sleep comorbidities and the optimal use of sleep recordings as part of epilepsy evaluation and follow-up. We also aim to improve knowledge and empowerment of families and caregivers by developing clear, accessible information materials (e.g. brochures and online resources) on sleep and sleep disorders in people with epilepsy.

Objectives

• Development and validation of standardised recommendations and clinical protocols for sleep assessment in people with epilepsy across ERN EpiCARE centres, covering both sleep disorders and sleep recordings used for epilepsy evaluation.
• Development of shared, evidence-based criteria on when and how to perform sleep recordings in different epilepsy syndromes and age groups.
• Strengthen collaboration between epilepsy and sleep experts, fostering an integrated, multidisciplinary approach to patient care.
• Increase awareness and clinical competence on the impact of sleep in epilepsy diagnosis, treatment, and outcomes, including through dedicated training activities and educational materials.

Current Activities

• Developing standardised EpiCARE assessment tools and clinical protocols for the evaluation of sleep disorders and sleep-related epileptic activity in people with epilepsy.
• Producing practical recommendations, flowcharts and training resources on indications, timing and modalities of sleep recordings in epilepsy care.
• Collaborating on multicentre research projects focused on the interaction between sleep and epilepsy, aimed at improving clinical care and generating shared evidence.
• Organising expert meetings, workshops, and webinars to share knowledge and promote best practices across centres, with a specific focus on clinical pathways and training in sleep–epilepsy assessment.