SUDEP Action

Making every epilepsy death count
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Epilepsy Registers

Registers are really important tools which help future epilepsy reasearch

There are a number of different epilepsy registers, which help researchers around the globe to develop understanding about the condition and how best to support people living with the condition. 
People with epilepsy, their families and carers can often provide information to these registers, sharing information & experiences which researchers can look at.

Some of the Registers available are listed below:

Epilepsy & Pregnancy Register 

The UK Epilepsy and Pregnancy register was established in 1996 for pregnant women in the UK - it supports research which looks at the outcomes of children with mothers who have epilepsy.
Women with epilepsy who become pregnant are encouraged to share information to the register early in pregnancy.


Epilepsy Deaths Register 

A register where anyone who has information about an epilepsy death can provide information to inform future research on epilepsy deaths, risk and the impact of epilepsy deaths on families.  
Information can be given online or a dedicated support team can support you to share the information you have. 

Other registers may be available where you are; you may find information about them here