The Epilepsy Deaths Register to be taken to the next phase
The Epilepsy Deaths Register will soon be taken to the next phase. The register has received 286 registrations since its launch in March 2013 and has also attracted the support of 24 coroners. This gives us a flying start in developing a vital resource for research into prevention of deaths in the young.
For this next phase of the register, SUDEP Action will be contacting everyone who has registered to ask for more information to be added to the register. The charity would like to appeal to all those who have registered to please respond and help us work to save lives.
Please let us know of any death that you might know of in your area of someone with epilepsy. Please also help us inform people about the register as well as SUDEP Action. Remember we are interested in prevention of all deaths in people with epilepsy whether sudden and unexpected or accident or from injury or other causes.
SUDEP Action will be meeting with UK research teams in January 2014 to plan the next steps. There is no national funding for register development in the UK, but we are now in a great position to seek funding with researchers keen to work with the register.
Cornwall Epilepsy Life Project
SUDEP Action will be taking work forward with coroners in the South-West following the completion of the first phase of the Cornwall Epilepsy Life Project funded by K’ts Fund. The research into epilepsy deaths in Cornwall over the last 9 years was made possible by K’ts Fund.
The next step will be to complete research with patients attending accident and emergency and doing our best to use the research to influence the local NHS to improve epilepsy services in the area. We will soon be starting work with the Plymouth coroner to help us move towards our goal of developing standardised reporting by coroners across the UK.
Meanwhile in the USA
The US has made funding available for research into SUDEP and a registry of deaths in the young has been launched across 17 US States aiming to get vital information from those involved in the investigation of sudden deaths. Funded by the National Institutes of Health and the Centers for Disease Control and Prevention, the registry will collect comprehensive information on sudden unexpected death in the young up to the age of 24.
The register will become a resource for researchers. Those responsible for investigating sudden deaths in the US are being invited to apply to work with the register. Source: Epilepsy Research UK