Other SUDEP Research Efforts
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?
Yes. There are several opportunities to participate in research and help us determine the cause and ways to prevent SUDEP.
- The North American SUDEP Registry
- 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 with the goal to help develop more effective preventive strategies. The multicenter NASR provides clinical data, DNA and brain tissue for the scientific community to study. Once consent is obtained, the NASR team can obtain all records and any biospecimens that the family wishes to share.NASR is a large collaborative effort with executive and advisory boards with diverse representation from more than 15 medical schools, the National Institutes of Health, Center for Disease Control, Epilepsy Foundation, CURE, Danny Did, and more than 10 other organizations. NASR research supports the Center for SUDEP Research as well as international investigators dedicated to understanding the causes of SUDEP.
- For more information email or call 855-432-8555 or contact Dr. Devinsky at 646-558-0801 or email.
Epilepsy Deaths Register
Families can also report epilepsy-related deaths to the Epilepsy Deaths Register. The registration takes around 5 minutes and following that you can choose whether to continue on to a survey and provide further detailed information. The Epilepsy Deaths Register is aimed at capturing the experiences of bereaved families as part of an international collaboration, which will compare experiences reported by bereaved families. Families can register online, or by contacting the team in the UK by phone or mail.
Translational Epilepsy Neurogenetics Laboratory at Baylor College of Medicine.
Directed by, Dr. Alica Goldman, MD. PhD, the Translational Epilepsy Neurogenetics Laboratory at Baylor College of Medicine is focused on understanding SUDEP mechanisms and genetic risk factors that predispose people with epilepsy to sudden death in epilepsy. Dr. Goldman’s research program of SUDEP is supported by The National Institutes of Health (NIH)/The National Institute for Neurological Disorders and Stroke (NINDS). Dr. Goldman and her research team are actively collaborating with the investigators of the NINDS supported Center for SUDEP Research (CSR).
Interested patients and families are encouraged to contact Dr. Alica Goldman at 713-798-2227 or email. They will be able to enroll into the following studies:
Genetic Research of Human Epilepsies: This research study is analyzing genetic risk factors that may predispose people living with epilepsy to SUDEP. Please contact the research team to inquire about further study details and to determine eligibility.
STOP SUDEP Program: This study is focusd on people with epilepsy that die to to SUDEP and families that have lost a loved one to SUDEP.
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