At Epilepsy Ireland, one of our key strategic objectives is to Advance strategies to reduce the risk and incidence of epilepsy deaths.
Epilepsy mortality has been identified as a key area where high calibre research is urgently needed worldwide and in 2015, Epilepsy Ireland partnered with the UK Charity, SUDEP Action to establish the Epilepsy Deaths Register for Ireland (EDRI). The establishment of this important register was made possible thanks to the fundraising efforts of the family and friends of the late Alan Gallagher, who sadly passed away from Sudden Unexpected Death in Epilepsy (SUDEP) in 2009.
The Epilepsy Deaths Register for Ireland (EDRI) is a safe and secure platform for those bereaved by epilepsy and for professionals to provide information about the deaths of people with, or suspected to have had, epilepsy.
Knowing why people with epilepsy have died, allows researchers to build a better picture of the condition and helps keep people safer in the future. Sharing information by reporting to the EDRI helps research teams identify what is happening in Ireland and carry out new research, which could help learn lessons from those who have died, in the hope of also saving future lives. The EDRI also anonymously feeds into the SUDEP Action Epilepsy Deaths Register, which is an international register of deaths.
If you have lost a loved one due to an epilepsy-related death or SUDEP - or even where epilepsy is not stated as the specific cause of death - we would appeal to you, when the time is right, to please consider providing details of your loved one to the EDRI. This information could provide researchers with vital clues on how to prevent future epilepsy related deaths. The EDRI is much more than a keeper of stories, it's a catalyst for change.
You can find further details on how to provide information by visiting the EDRI website via the button below: