SUDEP Awareness Series | Part 3 – SUDEP Research
In Part 3 in our SUDEP blog series – SUDEP Research, we’ll provide details on the current research being done to find answers regarding the possible causes for SUDEP.
Unfortunately, the causes of SUDEP are poorly understood, but many areas are currently being studied. Research into the possible causes of SUDEP focuses on problems with breathing, heart rhythm and brain function that occur with a seizure. You can read more about these areas of focus and how they may play a role, in our first blog in the SUDEP series here.
What is currently being done to raise awareness and perhaps more importantly identify those individuals most at risk for SUDEP?
In 2012, Hope for HH supported the development of the Institute of Medicine’s report titled, Epilepsy Across the Spectrum: Promoting Health and Understanding – where recognition and prevention of SUDEP was stressed. The report’s recommendations included the expansion of collaborative epilepsy surveillance efforts to the independent accreditation of epilepsy centers, the coordination of public awareness efforts, and the engagement of people with epilepsy and their families in education, dissemination, and advocacy activities. The report called for immediate action – across multiple dimensions – to improve lives. This report has proven to be an important driver in the collaborative effort to bring SUDEP to the forefront of topics that can no longer remain in the shadows.
Since 2012, great emphasis has been placed on education and awareness for not only epilepsy patients and families, but medical professionals as well. However, there continues to be challenges in reaching medical examiners and coroners (who are not necessarily medically trained) that are often unaware of SUDEP as a major cause of death in epilepsy. To accurately count the number of SUDEP cases, determine its cause, and ultimately to find opportunities for prevention, more accurate reporting is needed.
So, who are the major players in SUDEP research today? Fortunately, there are several collaborative projects that include participants at the highest levels of influence and funding.
Some of these include:
The Center for SUDEP Research (CSR) is a National Institute for Neurological Disorders and Stroke (NINDS) funded Center Without Walls for Collaborative Research in the Epilepsies. The National Institute of Neurological Disorders and Stroke (NINDS) is a part of the U.S. National Institutes of Health (NIH).
The CSR is composed of 9 groups of researchers from 14 institutions across the United States and Europe that brings together extensive and diverse expertise to understand Sudden Unexpected Death in Epilepsy Patients (SUDEP).
The CSR’s scientists and physicians investigate molecular biology, genetics, histopathology, electrophysiology, brain imaging, data analysis, and more. The goal is to identify the molecular and structural brain abnormalities underlying SUDEP, to use this information to identify features that could predict and identify those at risk of SUDEP, and hone in on those targets for the development of potential interventions.
With an investment of almost $6M over the course of five years CSR hopes to dramatically enhance our understanding of this poorly understood and devastating event. For a summary of their exciting research projects, you can read more here.
The SUDEP Institute created by the Epilepsy Foundation – The Epilepsy Foundation’s SUDEP Institute works with leading epilepsy organizations to promote information sharing and collaboration. Current partners include American Epilepsy Society, CDC, CURE, Danny Did Foundation, NIH/NINDS, North American SUDEP Registry, SUDEP Aware, and epilepsy experts.
The overall goal is to educate and involve:
- Individuals and families living with epilepsy
- Families whose loved one has died due to epilepsy
- Epilepsy specialists, neurologists, primary care physicians and nurses
- Coroners, medical examiners and first responders
The Institute’s most recent efforts include The SUDEP Challenge Initiative, which has awarding more than $1 million for a series of prize challenge competitions focused on predicting and preventing SUDEP. The current initiative, which goes until 2020, involves developing predictive biomarkers for those at greatest risk for SUDEP.
Citizens United for Research in Epilepsy (CURE) has been a leader in the SUDEP effort by launching a first-of-its-kind research program dedicated to SUDEP in 2004. Since then, CURE has continued to lead efforts to create breakthroughs – for example, partnering with NINDS to host the first-ever scientific SUDEP meeting in 2008, helping to establish the Partners Against Mortality in Epilepsy (PAME) Meeting in 2012, and funding cutting-edge SUDEP research to this day. The PAME meeting is every 2 years and will be meeting this June 14-16th in Alexandria, VA. If you are interested in attending, you can register here. You can also view the 2016 Meeting session videos and handouts here.
Cure continues to be a leader in SUDEP research and awareness by:
- Awarding over $4 million in SUDEP grants to date
- Collaborating with more than 40 SUDEP investigators
- Actively engaging with the North American SUDEP Registry and the Sudden Death in the Young Registry, and supporting the development of the Canadian SUDEP Registry
- Elevating physician and patient awareness about SUDEP
- Increasing federal funding for SUDEP research
- Helping establish respiratory arrest as a leading cause of SUDEP
- Helping establish generalized tonic-clonic seizures as a clear risk factor
Currently, there is one study being conducted at Baylor College of Medicine in Houston, TX that is recruiting patients and families to participate in testing in order to analyze genetic risk factors for those at highest risk for SUDEP.
See Dr Goldman’s contact information below:
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 focused on people with epilepsy that die due to SUDEP and families that have lost a loved one to SUDEP.
More research is needed to better understand the risk of SUDEP in patients with hypothalamic hamartomas. Hope for HH will continue to be a part of the conversation, at all levels, in order to better understand (1) the relationship between the nature, severity, and duration of epilepsy and the occurrence of SUDEP and (2) whether current treatments affect the risk of developing SUDEP.
If you believe your loved one is at a greater risk of SUDEP due to poorly controlled seizures or they are experiencing seizures at night, it is recommended that you have the SUDEP discussion with your neurologist. They can help determine if you or your loved one is at greater risk and what you can do to minimize that risk.
If you have been impacted by the death of a loved one due to SUDEP – we highly recommend you get in touch with the Danny Did Foundation. Founded by Chicagoans Mike and Mariann Stanton in January 2010 after the death of their four-year-old son Danny, the Danny Did Foundation works toward its mission to prevent deaths caused by seizures with these main goals in mind: advancing public awareness of Sudden Unexpected Death in Epilepsy (SUDEP), enhancing the SUDEP communication model between medical professionals and families afflicted by seizures, and the mainstreaming of seizure detection and prediction devices that may assist in preventing seizure-related deaths.
Please check out our complete SUDEP blog series:
- Part 1 – What is SUDEP? Who is at Risk?
- Part 2 – Talking about SUDEP with your doctors
- Part 3 – SUDEP Research