UK policy-makers rely on evidence of deaths collected by SUDEP Action, but are always in need of more information.
SUDEP Action has been funded to run a pilot project examining deaths and emergency admissions across a local population. A research team is working with A & E clinicians and the coroner and recommendations will be made to local health and social services on ways to reduce risk.
SUDEP Action also provides seed funding for King’s Health Partners – one of five Academic Health Sciences Centres in England – and has supported:
• A five-year audit to identify survival outcomes from surgery, as well as Vagal Nerve Stimulator interventions – a new type of treatment, which aims to reduce the number, length and severity of symptoms.
• A pilot to monitor breathing and other changes in people experiencing seizures
• Analysis of trends in deaths and injuries
• A survey of bereaved families
Research we have funded has been widely recognised and one paper won an award in 2012. We support research teams across the UK and internationally to secure SUDEP funding and promote collaboration where we can.
At SUDEP Action we consider it is vital that research not only reaches policy makers and clinicians, but also the general public. We have set up www.sudepglobalconversation.com, where it’s possible for professionals and members of the public to interact – helping to combine the latest science with human experience. We are also organising SUDEP awareness and risk training sessions to educate non-specialists.
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