We'd like your feedback
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Dr
Arjune
Sen
arjune.sen@ouh.nhs.uk
Dr
Arjune
Sen
arjune.sen@ouh.nhs.uk
Sarsha
Wilson
sarsha.wilson@ouh.nhs.uk
Episodic and paroxysmal disorders
This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.
Sudden unexpected death in epilepsy (SUDEP) is a tragic complication of uncontrolled epilepsy, occurring when no other cause of death can be found. Every year between 5 and 9 in 1000 people suffering from epilepsy die from SUDEP; over 40 years up to 12% of patients with active uncontrolled epilepsy may die.
In 2008, the NIH National Institute for Neurological Disorders and Stroke (NINDS) convened a workshop to assess current SUDEP knowledge and to make recommendations. The group concluded that multicentre studies are needed to understand better who may be at risk of SUDEP, and to determine whether there are markers of who may be high risk for SUDEP (Hirsch et al, 2011).
This multicentre pilot study is led from NYU, USA (PI Dr Orrin Devinsky); it involves a great number of centers throughout the world who are contributing cases. The aim is to examine clinical risk factors for SUDEP.
The workplan is to select patients with treatment-resistant epilepsy who underwent video EEG monitoring at five institutions (i.e Oxford University Hospitals, Evelina Children's Hospital, King’s College London, National Hospital for Neurology and Neurosurgery, and Epilepsy Society, Gowers Center) in two or more consecutive years and had a seizure recorded. We will then establish mortality in this group, and as a second step determine who died of SUDEP (probable and definite based on established criteria; Nashef et al., 2012).
Each SUDEP case will be compared to two control subjects of same age and gender having had video EEG and seizures recorded in the same retrospective two year time period. We plan to collect available clinical data from the clinical chart, including seizure history, medication history, EEG traces, brain MRIs, genetic studies, ECGs, laboratory studies. This study will provide feasibility data for a larger multi-centre study to identify biomarkers associated with SUDEP.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Case-controlled study;
You can take part if:
You may not be able to take part if:
Age < 6months or > 65 years Individuals will be excluded from the study in the event of uncertain diagnosis of epilepsy, including cases in which all events are suspected to be psychogenic or other non-epileptic seizures.
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
Dr
Arjune
Sen
arjune.sen@ouh.nhs.uk
Sarsha
Wilson
sarsha.wilson@ouh.nhs.uk
Dr
Arjune
Sen
arjune.sen@ouh.nhs.uk
The study is sponsored by New York University Langone Medical Center (USA) and funded by New York University (USA) .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 47781
You can print or share the study information with your GP/healthcare provider or contact the research team directly.
