No one knows what causes SUDEP, but many areas are being looked at. SUDEP occurs most often at night or during sleep and the death is not witnessed, leaving many questions unanswered. There may be evidence that a person had a seizure before dying, but this isn’t always the case. 

Current research into the possible causes of SUDEP focuses on problems with breathing, heart rhythm and brain function that occur with a seizure. 

  • Breathing: A seizure typically may cause a person to briefly stop breathing (apnea).  If these breathing pauses last too long, they can reduce the oxygen delivery to the heart and the brain. This can be life threatening if not treated immediately.  A person’s airway may sometimes become obstructed or blocked during a convulsive seizure, leading to suffocation (inability to breathe).
  • Heart Rhythm: Rarely, a seizure may cause a dangerous heart rhythm or cardiac arrest.
  • Brain Function: Seizures may interfere with the function of vital areas in the brainstem that controls breathing and heart function. If this happens, these brain areas may not work right, causing breathing and heart rate problems. 
  • Others: SUDEP may result from more than one cause, or from a combination of breathing difficulty, abnormal heart rhythm and changes in brain function. Or, it may result from factors researchers have yet to discover.

If I have lost a loved one to SUDEP, can I participate in research?

  • If you have recently lost a loved one to SUDEP, contact the North American SUDEP Registry (NASR) and participate in their study to help discover the causes of SUDEP. The multicenter NASR provides clinical data, DNA and brain tissue for the scientific community to study. For more information email or call 855-432-8555 or contact Dr. Devinsky at 646-558-0801 or email.
  • The Ion Channels in Epilepsy study at Baylor College of Medicine is also accepting participants. The aim of the study is to identify genetic risk factors that predispose persons to epilepsy and to sudden death.  For more information, contact Dr. Goldman at 713-798-0980 or email.

What are the current studies around SUDEP?

Where can I find current trials around SUDEP and Epilepsy?

SUDEP Research Consortium 

Epilepsy.com Listing of Clinical Trials 

Center Watch 

ClinicalTrials.gov 

H.E.R.O: Human Research Epilepsy Opportunities

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