SUDEP Data Alliance

Ending SUDEP by 2030

Our mission

Our mission is to create an open data network to solve the mystery of SUDEP, in the hope of developing new life-saving interventions. The SUDEP Data Alliance provides real-world data that unites a global community of researchers, non-profits, mission-driven companies, and people impacted by epilepsy.

In memory of Robin

Our story

The inspiration and need for the SUDEP Data Alliance was born after our cofounder lost a friend, Robin, to SUDEP. We felt first hand the devastating impact that SUDEP leaves behind for families and loved ones. As fate would have it, the events leading to Robin’s death were all recorded, making this the first fully recorded SUDEP event in history.

Looking to the future, we’re here to carry on Robin's legacy and help prevent deaths due to this tragic complication of epilepsy.

"Robin was an incredibly caring person. Had many people depending on him for emotional support. Robin was both very smart and very funny. He loved the Buffalo Bills team, and we miss him a lot!" -Lisa, Robin's mother

About SUDEP

Sudden Unexpected Death in Epilepsy (SUDEP) is the term used when a person with epilepsy dies without warning and where the post-mortem fails to establish any other cause of death. SUDEP claims the lives of over 1 in 1,000 people with epilepsy every year. Its cause is currently unknown. 

Learn more at sudep.org

Our approach

Using the highest security standards, we use a “citizen science” approach to crowdsource unprecedented amounts of data from people and families with epilepsy worldwide. The SUDEP Data Alliance shares anonymized epilepsy data with network members. Members can also find and publish reidentified data sets, while collaborating with other researchers to accelerate the development of new interventions to prevent SUDEP.

Our cofounders

About Neureka

Neureka brings peace of mind to people with epilepsy, while empowering a global data community to uncover the cause of SUDEP and prevent this devastating condition. ​​

Our vision is to be the global leader in AI-powered neurological care, empowering people to live their best life.

Visit Neureka

About Briya

Founded by cybersecurity specialists with U.S. headquarters in Nashville, Briya is an end-to-end data-retrieval platform that enables longitudinal health data to be securely retrieved in real time.

Briya leverages privacy-preserving decentralized architecture to seamlessly provide researchers and clinicians with better data, shortening the time to develop new medicines and treatments.

Visit Briya
Ray Iskander
"Exponential technologies have the potential to eradicate SUDEP from human civilization before 2030. The SUDEP Data Alliance members pledge to work together to make this happen faster.”
Pam Holt
“Radical partnerships change the world, and it is why Briya is honored to help develop the SUDEP Data Alliance. This partnership will drive the innovation to solve SUDEP and save lives."
Dr. Aiman Abdel-Malek
“Between myself and my daughter, we lost three friends to SUDEP. Unlike hypoglycemia, SUDEP risk is NOT widely publicized or talked about by providers, and it is time to change the narrative. I fully support the initiative to build the SUDEP Data Alliance and create technology solutions that will save many people with epilepsy whose lives are put unnecessarily at risk.”
Dr. Isa Conradsen
“SUDEP has long been a struggle, with too little is known about what causes it, and too many lives have been taken by it. The need for the SUDEP Data Alliance is enormous.”
Dr. Jong Woo Lee
For a rare but deadly disease like SUDEP, collaboration and data sharing will be critical in finding ways to identify patients at highest risk and develop preventions. The SUDEP Data Alliance holds this promise.
Dr. John Stern
“Future success in preventing SUDEP depends on better understanding patterns in epilepsy we can’t see with today’s limited data. By crowdsourcing and analyzing large epilepsy data sets, the global research community can unite to help end the tragedy of SUDEP.”
Dr. Daniel Branco
“SUDEP is one of those causes of death we intend to eliminate from neurological statistics of the future, for now we have the means and the technology to prevent it.”
Dr. Vikram Rao
“We are starting to realize that seizures in epilepsy are not as random as once thought. Longitudinal monitoring in large groups of individuals is the key to anticipating when seizures are most likely to occur and to preventing SUDEP, the most devastating outcome in epilepsy.”
Dr. Gavin Winston
“Patients with refractory epilepsy being considered for surgery are at particularly high risk of SUDEP, and I hope that making data more widely available for research can reduce the risk of this tragic consequence of seizures.”
Karen St. Marie
As a mother with a son who has refractory epilepsy, the unpredictability of SUDEP is terrifying and a concern that we deal with on a daily basis. The SUDEP Data Alliance provides families with much needed hope for new solutions to one of the most difficult situations associated with epilepsy.
Dr. Jörg Hölzing
"In my role as father of a daughter suffering from Dravet Syndrome, I am deeply honoured and excited to be part of the SUDEP Data Alliance. SUDEP is and remains the biggest concern and fear of patients and caregivers alike, and any progress and insight in this field will be crucial to bring true relief to anyone impacted by epilepsy."

Inaugural members

Academy Medical
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Academy Medical is a service-disabled veteran-owned small business that improves the health and well-being of service members by making the complex procurement process easier for supplier and federal agencies.
Dr.
Aiman Abdel-Malek
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Dr. Aiman Abdel-Malek is currently the Executive Chairman, Advisory Board, Thirdwayv Inc., Irvine California. He served as the Executive Vice President and Chief Technology Officer at Insulet Corporation (NASDAQ: Podd) until his retirement in April 2019. Aiman holds a Ph.D. in Biomedical Engineering from the University of Southern California. He serves as a Board Advisor to Biolinq, Inc (San Diego, CA), CuePath Innovation (British Columbia, Canada), and Cignti Corporation(symbol: Cigniti.BO) as well as the University of Pennsylvania PRECISE Center for Safe AI. He has over 30 patents and publications and is a frequent keynote speaker at various digital healthcare, secure IoT, and mobile digital healthcare forums.
EEG to Go
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This service was created to offer patients an alternative to hospitals and inpatient EEG services. We offer a comfortable setting for the application process and then you spend your time AT HOME, or in the comfort of your hotel room, for our patients who travel in. Our goal is to get you the best possible data collection and deliver a positive experience.
ERI Group
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ERI is a full-service development, quality, regulatory and manufacturing partner to the medical device ecosystem, with 35+ years’ experience in electro-mechanical therapies. Our mission is to “help visionaries change lives”, and as such involvement in the SUDEP Data Alliance, and cooperation with its growing membership of entrepreneurs and physician leaders in this life-saving space is a natural fit for us.
Epilepsy Foundation Central & South Texas
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Epilepsy Foundation Central & South Texas is a non-profit, charitable agency designated as a 501(c)(3) organization by the Internal Revenue Service. As one of 47 Epilepsy Foundation National Organization affiliates, we cover 79 Texas counties encompassing 89,199 square miles. We are the only organization dedicated to the health and welfare of more than 160,000 individuals with epilepsy residing in Central & South Texas.
Family Health Care Resources
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Family Health Care Resources is a non-profit organization founded in 2010 with the primary objective of helping families and individuals in Southern California who need medical services but do not know who or where to turn to.
Dr.
Gavin Winston
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Dr. Gavin Winston is an Associate Professor at Queen's University, Canada where he is a clinician scientist and epileptologist interested in the treatment of people with refractory epilepsy. His research includes the application of multimodal imaging and machine learning to the diagnosis and surgical treatment of epilepsy and he contributes to two international multicentre neuroimaging studies in epilepsy. Patients with refractory epilepsy being considered for surgery are at particularly high risk of SUDEP, and he hopes that making data more widely available for research can reduce the risk of this tragic consequence of seizures.
Health Engine
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Health Engine is UC Berkeley's accelerator for early-stage healthcare startups. Their mission is to propel the best, most impactful healthcare startups forward.
Dr.
Isa Conradsen
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Executive Assistant To Chief Executive Officer, Teknologisk Institut; former Clinical Research Manager, IctalCare A/S.
Dr.
John Stern
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Dr. Stern is a Professor in the Department of Neurology, Director of the Epilepsy Clinical Program and Director of the Epilepsy Fellowship Training Program at the David Geffen School of Medicine at UCLA. His clinical activities encompass a full range of diagnostic and treatment modalities for seizures and epilepsy. Throughout his career, Dr. Stern's research focus has been on the networks of the brain's functional activity that produce the manifestations of seizures and epilepsy.
Dr.
Jong Woo Lee
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Jong Woo Lee, MD, PhD, directs the Brigham Critical Care Monitoring Program and is the Clinical Director of the Epilepsy Division. He graduated from Harvard College and obtained his medical and doctorate degrees at McGill University and the Montreal Neurological Institute before completing the Partners Neurology Residency and Clinical Neurophysiology Fellowship at BWH. Dr. Lee’s areas of clinical expertise and research interests include critical care EEG, status epilepticus, cardiac arrest prognostication, brain tumor associated seizures, sudden unexpected death in epilepsy, and the medical management of epilepsy.
Dr.
Jose Cavazos
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Dr. Jose Cavazos is a neurologist in San Antonio, Texas and is affiliated with University Health-San Antonio. He received his medical degree from Monterrey Institute of Technology and has been in practice for more than 20 years.
Dr.
Jörg Hölzing
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Dr. Jörg Hölzing, global executive with more than 20 years experience in healthcare. Most recently SVP Strategy & Customer Solutions at Roche, responsible for the overall Business Unit Strategy, Data & Ecosystem Strategy, Partnering & BD, and new product development for the Diabetes Care business. Jörg also acts as Managing Director of mySugr GmbH, a 100% Roche owned digital health company and manufacturer of the globally leading diabetes management app. He is passionate about patient centricity, innovative approaches to healthcare and ultimately making patients' lives easier.
Medicinia
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Medicinia develops technologies that improve the digital experience of patients around traditional therapeutics and digital biomarkers that help patients, families and clinicians track health and disease parameters for better outcomes.
Miles Levin
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Writer and Director of Under The Lights movie.
Oracle for Research is a unique program, built to support the work of scientific researchers. Many of the people on our team have a background in research, and we have a deep understanding of the research process. At our core, we believe technology shouldn’t hinder research, and we’re here to help you navigate the increasingly complex landscape surrounding the back end of computational research. We want to help you store, analyze, and manage your data.
Dr.
Pavel Klein
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MD, FAAN, FAES Director, Mid-Atlantic Epilepsy and Sleep Center, Clinical Professor, Department of Neurology, The George Washington University Before founding Mid-Atlantic Epilepsy and Sleep Center, Dr. Klein was Instructor in Neurology at Harvard Medical School (1996-99), and Director of the Epilepsy Program, of the Clinical Neurophysiology Laboratory and of the Neuroendocrine Unit at the Georgetown University Hospital (1999-2003). Dr. Klein is currently Adjunct Associate Professor of Neurology at George Washington University.
Dr.
Robert Wechsler
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MD, PhD, FAES, FAAN Owner, Consultants in Epilepsy & Neurology, PLLC Owner, Idaho Comprehensive Epilepsy, PLLC Dr. Robert Wechsler is a fellowship-trained and Board certified epileptologist in private practice in Boise, Idaho. He is the owner of Consultants in Epilepsy & Neurology, PLLC, and medical director of the Idaho Comprehensive Epilepsy Center, which he opened in 2005. Dr. Wechsler received his medical degree from Finch University of Health Sciences/The Chicago Medical School in Illinois, where he also received a doctorate in neuroscience. He completed his residency in neurology at the Barrow Neurological Institute/St. Joseph’s Hospital in Phoenix, Arizona, and his fellowship in epilepsy at the Stanford University Hospital Comprehensive Epilepsy Center in California.
Dr.
Selim Benbadis
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Dr. Benbadis obtained his medical degree at the University of Nice (Nice, France), where he completed a residency in family medicine. He then moved to the U.S. and completed his neurology residency at the Cleveland Clinic Foundation, in Cleveland, Ohio, where he stayed an additional 2 years to complete a fellowship in epilepsy, EEG, and sleep medicine. He is Board-certified in neurology, epilepsy & clinical neurophysiology, and sleep medicine.
Sofie’s Journey
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Sofie’s Journey is a non-profit organization started by Brad and Candy Levy, in honor of their daughter, Sofie, who was diagnosed with epilepsy at five years old. The Levy family founded Sofie’s Journey to foster their mission of spreading awareness for epilepsy.
South Carolina Advocates for Epilepsy (S.A.F.E.)
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Karen St. Marie started South Carolina Advocates for Epilepsy (S.A.F.E.) to provide support for people with epilepsy and their families, after her son was diagnosed and there were no resources in their state that focused exclusively on the epilepsy community. S.A.F.E’s purpose is to educate, advocate, and inspire those living with epilepsy and help them lead a normal life. All funds raised and donated support patients and families in South Carolina.
The Center for Epilepsy and Seizure Education in BC
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The Center for Epilepsy and Seizure Education in BC is dedicated to creating and providing support, information, and education to families and individuals who live with and are affected by epilepsy.
The Chelsea Hutchison Foundation
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The Chelsea Hutchison Foundation serves individuals, families and communities affected by epilepsy by raising Awareness of the common yet little-known condition SUDEP (Sudden Unexpected Death in Epilepsy), by providing support and equipment for prevention of this occurrence, and by creating a safe space and raising awareness within the greater community.
UCSF Rosenman Institute
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The UCSF Rosenman Institute is the San Francisco Bay Area’s premier healthtech ecosystem. They offer mentorship, connections, insider knowledge and community to guide entrepreneurs from concept to commercialization of radical innovations. They are believers in the power of health technology to change lives. Yet they know that the journey of getting a healthtech innovation to market is very challenging. They’re passionate about giving talented entrepreneurs the know-how, connections, and insider information they need to be successful. Their ultimate mission is to improve patients’ lives by reducing time to market for transformative solutions.
Dr.
Vikram Rao
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Vikram R. Rao, MD, PhD, FAES Ernest Gallo Distinguished Professor in Neurology Associate Professor of Clinical Neurology Chief, Epilepsy Division Department of Neurology and Weill Institute for Neurosciences University of California, San Francisco Dr. Vikram Rao is a neurologist who specializes in treating patients with epilepsy. He takes a holistic approach to helping patients deal with the challenges of their seizures and works at multiple levels to improve their quality of life. He has a particular interest in utilizing medications, surgery and implanted neurostimulation devices to care for patients with complex epilepsy.
What the EF
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A place to share, cry, and laugh at all our epilepsy WTF moments.
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