A proven track record over decades
About Research
At the forefront of new projects
We’ve been at the forefront of major research projects for many years, and we continue to lead in this area.
We have worked on national and regional reports that have exposed major public health inequalities experienced by families – starkly revealing that people in deprived communities are three times more likely to die; that deaths in pregnant women and their unborn have doubled; and that people with epilepsy and a learning disability are dying 10 years younger than people with a learning disability who do not have epilepsy (but who have other conditions).
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About Research
Epilepsy is prioritised globally by the World Health Organisation
Today, epilepsy is prioritised globally by the World Health Organisation and the UK Epilepsy Research Priorities Partnership has made epilepsy mortality the number one priority for research.
Research we have funded has been internationally recognised and we support high-profile research teams across the world, working to secure SUDEP funding and promote collaboration where possible.
UK policy-makers rely on evidence of deaths collected by us, but we are always striving to gather more information and contribute to greater understanding.
SEE RIGHT: ‘How SUDEP Action has influenced me’ by Professor Mike Kerr
About Research
The Epilepsy Deaths Register (EDR)
Our unique Epilepsy Deaths Register (EDR) offers the bereaved an online research platform to share their experiences. It is the largest and most powerful collection of information on epilepsy deaths in the world.
The EDR is continuing to shed light on realities. For example, the Epilepsy Deaths Register found that only 50% of bereaved people reporting to the register were aware that their loved one could die suddenly from SUDEP.
About Research
Understanding for the future
The communities we serve have always faced a system-wide lack of recognition. SUDEP Action has fought for them to get answers to their questions.
Too many families are still losing loved ones to epilepsy-related deaths. A single preventable death is too many.
We will continue to fight for them – leading on projects that will bring increased understanding and knowledge to the future, whilst drawing on facts and lessons from the past.
To find out more about research projects, or if you would like to work with us, contact us.
Also see
Fighting for the bereaved so their voices are heard
Some of the past projects we’ve led and worked on
Guidelines & reports: more information
For one-to-one support after an epilepsy death contact our support team today
We provide the only support line for people bereaved by an epilepsy death and offer access to qualified counsellors who have a special interest and understanding in sudden and traumatic death.
