Principles underpinning the Epilepsy Deaths Register

The purpose of the Epilepsy Deaths register

The register of epilepsy related deaths has been conceived and developed by bereaved relatives of those who died from epilepsy. The register is owned and operated by SUDEP Action with the purpose of reducing the risk of epilepsy deaths in the future.  Many trustees of the Charity have lost loved ones to epilepsy and are committed to supporting and developing the register.

The paramount principle behind the register is to collect information from as many bereaved families and other reporters as possible to try and make some sense of what happened, why the death occurred and how
to prevent future tragedies. It is so important that the register has been endorsed by research teams across the UK and by Norman Lamb, former MP, Minister of State for Care and Support.

Protecting the individual

The interests of the individual who died are acknowledged by the non-intrusive way of gathering information. The register will only hold data volunteered to us through contact with the Epilepsy Deaths Register team
either on the web, by phone or by post. Nothing will be used for the register unless consent is obtained and this consent can be withdrawn at any time. All data held securely and anonymised for research purposes.

Protecting the bereaved

During this difficult time, bereavement support will be available to relatives and friends of the person who has died. The main purpose of the SUDEP ActionCharity is to support and help the bereaved; either confidentially through the EDR Team or, if required, through the
specialist services provided by the charity..

The benefits of the register

At present there is nowhere to collect and store information about circumstances leading up to death or about the circumstances and investigations after death. The Charity is driven by a need to better understand the cause of death and how to reduce the risk of death. That is why the Charity has strong links with researchers with a range of research interests relevant to epilepsy deaths. 

The risks of having a register

The risks are small as long as the information is anonymous and is held securely.  Any research that uses information from the register must get permission from the Charity and then get appropriate approval for this
research.