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Researchers find SUDEP risk of people with intellectual disability frequently ignored in SUDEP research

A recent study - Does intellectual disability increase Sudden Unexpected Death in Epilepsy (SUDEP) risk? was published in the Seizure Journal 2015. It reviewed SUDEP literature and found that only 50% of the studies considered Intellectual Disability (ID) in the planning stages.  When Intellectual Disability was included, most highlighted ID as a risk factor for SUDEP.  

In the UK, about 25% of people with epilepsy have learning disability (125,000).  SUDEP is recognised as one of the top 2 causes of deaths in people with severe ID and treatment resistant epilepsy. 

 The study concluded that Intellectual Disability is poorly covered across research into SUDEP and epilepsy risk. Definitions, rates of mortality and the impact of different settings for care of this high risk group need to be addressed.

Jane Hanna said: “SUDEP Action welcomes this review which highlights the research gap in understanding SUDEP risk in the most vulnerable people living with epilepsy.  We know people with Intellectual Disability are at higher risk but we do not know enough about mortality rates of these patients or whether these rates are affected by where or how they receive care. We do know that since UK national clinical guidance in 2004 recommended SUDEP risk assessment in people with Learning Disability that the needs of this group are not being met”

Dr Rohit Shankar commented: “Not enough is being done to reduce the SUDEP risk of people with Intellectual Disability and epilepsy.  It is vital that research and clinical teams from both the epilepsy and ID field work together to reduce the risks of this group “ 

SUDEP Action is currently a stakeholder in a new epilepsy and learning difficulties research register which is looking at medication use in this group with a view to improving outcomes.

This research comes at a time when the Government’s plans to improve care services for people with ID come under scrutiny by a National Audit Office report published on the 4th February ( ).


Young C, Shankar R, Palmer J, Craig J, Hargreaves C, McLean B, Cox J, Hillier R 

Does intellectual disability increase sudden unexpected death in epilepsy (SUDEP) risk?

Seizure [2015, 25:112-116]

Related articles  

Kerr M. Implications for clinical practice – SUDEP in adults with an intellectual disability. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors.  SUDEP - Continuing the global conversation. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [02/03/2015]. Available from:!kerr/c4f2