Dravet Syndrome is characterised by high epilepsy-related premature mortality and a marked young age at death. Sudden Unexpected Death in Epilepsy (SUDEP) is the leading reported cause of death in Dravet syndrome, accounting for nearly half of all deaths[1]. DSEF wants to contribute to better understanding of SUDEP in Dravet Syndrome with the ultimate goal to reduce the number of SUDEP cases dramatically. A working group was installed within the DSEF in 2016 to make an action plan.

What is SUDEP?

It refers to a death in a person with epilepsy in which there is no other clear cause of death (such a cancer, stroke, heart disease or an accident). In cases of SUDEP, there is often evidence of an associated seizure.


The most common criteria used to determine whether a death is due to SUDEP are:

  • The person has epilepsy, which is defined as recurrent unprovoked seizures.
  • The person died unexpectedly while in a reasonable state of health.
  • The death occurred suddenly and during normal activity (often during sleep).
  • An obvious medical cause of death could not be determined at autopsy.
  • The death was not the direct result of status epilepticus.


At the moment physiopatological mechanisms that lead to SUDEP are unknown and there are currently no proven ways to prevent it.


International group of collaborating researchers are currently dedicated to uncovering the risk factors, causes, and mechanism of SUDEP to improve future epilepsy treatment and SUDEP prevention. Patients community can help studies sharing data and materials.


In the general assembly in Prague 2016 DSEF agreed to work on the following goals, as proposed by the SUDEP working group:


  1. To provide information about SUDEP to families with the aim to create awareness.
  2. To identify and partner with the main worldwide research consortium studying SUDEP in Dravet syndrome.
  3. To identify common data registry and biobanks to collect European cases of SUDEP – data and biological samples (blood and/or tissues).
  4. To gather – through a shared, common and established procedure – clinical data and, possibly, biological samples about SUDEP cases in Europe (scientifically proved if possible) to help research.
  5. To gather, from medical advisors, and share information about possible effective actions to minimise the risk of SUDEP (IE: suggestions about devices, style of life, CPR – cardiopulmonary resuscitation etc.) and inform about the major risk factors and profiles.


Several concrete action points have been formulated to achieve these aims.

[1] Shmuely S, Sisodiya SM, Gunning WB, Sander JW, Thijs RD. Mortality in Dravet syndrome: A review. Epilepsy & Behavior 2016; 64: 69-74