Epilepsy Deaths Register

Making every epilepsy death count

Who can register?

Who can register?

The Epilepsy Deaths Register makes every epilepsy death count

If you are over 18 and know about a death in someone with epilepsy, you can provide vital information for research. Reports of a death can be provided by anyone who knew the deceased.

A death can be reported more than once, multiple reports will help to build a more complete picture of the lifestyle and choices made by the person who died.  Family, friends, flat-mates, neighbours and colleagues may have different information that may not be known by anyone else. 


Professional reporters:

You may be a professional who was involved in the care of the deceased, a doctor, nurse or coroner, your extra information can be very important to the research team.


Reporting from outside the UK

Registries outside the UK are limited, if you do live outside the UK, you may still register on the EDR as we work with many International research teams. However, you may also wish to contact the EDR team direct to find out if there is a registry, or any research projects that you could provide information to within your Country.

We value your trust and your information will remain confidential. We do not disclose to anyone, even within the same family that information has been provided

The power of the Epilepsy Deaths Register will increase with every report.  You can choose how to report the death to us:

How to report:

Online:  Complete our on-line registration form

By post:  To request a printed questionnaire please either telephone or contact the team here

By telephone: Please call our confidential reporting line: 0330 088 1220 (local call rate from the UK)


You also control the future use of information you provide to the Epilepsy Deaths Register.  

If you decide to remove your information you can do so at any time by contacting the team.

Tel: 0330 088 1220 (local call rate from the UK) Email: [email protected]



Who can register?
Expert Team