Principal Investigator
Dr. Cristina Rescke, FutureNeuro and RCSI
Investment
€240,000, over three years. 50% of the funding for this project has been made available by the Health Research Board (HRB) through the Joint Funding Scheme operated by the HRB and Health Research Charities Ireland, of which Epilepsy Ireland is a member. Epilepsy Ireland will fund the other 50%.
About the Project
Dravet Syndrome (DS) is a rare and severe form of genetic epilepsy associated with treatment-resistant seizures. Adults with DS often experience significant sleep problems that worsen with age, but little is known about how these disturbances relate to seizure activity, cognitive outcomes and the risk of sudden unexpected death in epilepsy (SUDEP).
Our bodies have an internal 'clock', known as the circadian rhythm. Over a roughly 24-hour period, it helps regulate sleep, hormone production, and other daily biological processes. A misalignment of this rhythm may be one of the factors behind the symptoms and risks seen in DS.
This study will be the first one to investigate how sleep, circadian rhythms, medication timing and biological activity interact in adults with DS. Researchers will collect data over several weeks, using non-invasive home monitoring. The participants will wear monitoring devices, write sleep diaries and provide saliva samples. These measurements will then be combined with their medical information such as health history, medications, and seizure records, to provide a complete picture of daily rhythms, sleep, and treatment response.
By uncovering biological patterns associated with sleep and circadian disruption in individual participants, researchers aim to identify opportunities for more personalised care. The study will also explore chronotherapy, an approach that times treatments to the body's internal 'clock' to maximise their effectiveness. Ultimately, the findings could develop more personalised approaches to treatment, improve quality of life and lead to efforts towards reducing the risk of serious complications such as SUDEP.