SUDEP Action

Making every epilepsy death count
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Statement of Research Need

Epilepsy ranks in the top ten causes of premature deaths and is potentially avoidable. Many young and healthy people have lost their lives and in the UK more than 3 people die a day. SUDEP Action is working with research teams across the UK in a range of initiatives, but funds are urgently needed to take forward the research that is needed to provide vital evidence for effective prevention.

Researchers have joined SUDEP Action in calling for epilepsy mortality to be recognised as a top priority for UK and European research funding.  This Statement of Research Need agreed by research teams from universities and hospitals across the UK identifies the research need. It will be used to guide the work of the Epilepsy Deaths Register and will be used to gather support for our work with funders and governments. 

The Statement has been developed by: 

Professor Stephen Brown, SUDEP Action
Jane Hanna OBE, SUDEP Action 
John Hirst CBE, SUDEP Action
Dr Elaine Hughes, Consultant Paediatric Neurologist, King’s College Hospital NHS Foundation Trust    
Professor Mike Kerr, University of Cardiff, Wales 
Dr John-Paul Leach, Southern General Hospital, Glasgow and Hon. Associate Professor at Glasgow University 
Dr Lina Nashef, Consultant Neurologist, King’s College Hospital NHS Foundation Trust 
Karen Osland, SUDEP Action
Professor Mark Richardson, King’s College, London
Professor Ley Sander, University College, London 
Dr Rohit Shankar, Consultant Neuropsychiatrist, Cornwall Partnership NHS Foundation Trust and Hon. Associate Professor Exeter Medical School.
Professor Sanjay Sisodiya, University College London 
Professor Henry Smithson, University College Cork, Ireland

What are the main research questions we want answered?  

1.    The epidemiology of epilepsy mortality in children and adults including an
        indication of trends and the framework through which prevention strategies
        can be assessed

2.    Why do some people with epilepsy die prematurely?

3.    How can we prevent excess mortality related to epilepsy from all causes
       including drowning and accidents; suicide; status epilepticus and SUDEP?

4.    Can epilepsy-related mortality be reduced?   

a.    What are the modifiable risk factors?
b.    How can they be modified?
c.    How important are social factors and life-style factors? 
d.    Will an increase in awareness of the risks have a positive effect?

5.    Why do people die of SUDEP?

a.    Is it more common in particular types of epilepsy?
b.    What proportion of SUDEP register cases are in people with so called less
       severe epilepsy and hence potentially avoidable?
c.    Why is SUDEP less common in children than adults?
d.    Can studies into rare disorders e.g. Dravet syndrome which carry a higher risk
       contribute to a wider understanding of SUDEP? 
e.    Can studies of deaths in the learning disability population contribute to a wider
       understanding of SUDEP?
f.     Is SUDEP associated with particular drug or non-drug treatments or changes to
       these?
g.    What is the role of life-style and behaviours which put a person at risk?
h.    Is it due to sub-optimal care?    
i.     Is there a genetic pre-disposition to SUDEP?
j.     Are there pathological factors underlying SUDEP?
k.    Are there SUDEP bio-markers which can help identify at risk populations?

6.     How effective are existing practices aimed at reducing risk?
        
a.    Does communication of risk reduce risk-taking behaviours?
b.    Are seizure detection devices and seizure alarms protective?
c.    Is night-time surveillance protective? 
d.    Does active management of refractory epilepsy reduce risk?

7.    Can epilepsy service design and delivery locally and nationally reduce risk and
        offer protection from SUDEP to children and adults?

a.    What flagging mechanisms are effective in targeting people at risk?
b.    Is there a gap in access to services in targeted populations and what are cost-
       effective interventions in the community that would improve access?
c.    Are any existing service models protective of at risk populations?
d.    What population-based interventions reduce risk and offer protection?
e.    What interventions can support clinical, patient and carer decision-making and
        management of risk?

8.     Can epilepsy service design and delivery locally and nationally reduce risk and
        offer protection from drowning, accidents; suicide; status epilepticus? 

a.    What flagging mechanisms are effective in targeting people at risk?
b.    Is there a gap in access to services in targeted populations and what are cost-
       effective interventions in the community that would improve access?
c.    Are any existing service models protective of at risk populations?
d.    What population-based interventions reduce risk and offer protection?
e.    What interventions can support clinical, patient and carer decision-making and
        management of risk?

9.    Can the current burden of epilepsy mortality on society be reduced ?

a.    What is the impact on the family ?
b.    How can services for families be improved ?
c.    What interventions can reduce the impact on the family and society?
d.    What is the economic burden or cost of mortality?

10.   How good is the data collected by research studies?

a.    How accurate and accessible is clinical data?
b.    How can data be accurately collected and analysed?
c.    How can register development be sustained?