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Epilepsy Foundation SUDEP Institute Launches Fourth Challenge: Predictive Biomarkers of Epilepsy Seizures

SUDEP Challenge Initiative Offers More Than $1 Million in Prize Money for Challenge Winners

The Epilepsy Foundation SUDEP Institute will be awarding more than $1 million for a series of four prize challenge competitions. The first challenge, which awarded $15,000, sought creative and viral advocacy campaign(s) to inform and educate people with epilepsy, families, and the health care community. Campaign submissions were designed to change behaviors leading to better seizure control and freedom, therefore reducing sudden unexpected death in epilepsy (SUDEP) risk. Read about the winners of the first challenge.

The second challenge, which awarded $30,000, asked solvers to develop an intervention to help people with epilepsy comply with treatment plans and decrease their risk of seizures. The winner of this challenge is Epilepsy Self Monitoring, or EpSMon, a mobile app that is designed to monitor epilepsy activity between doctor visits, determine if a person is at an increased risk for seizures, and give information on how to decrease risk.

Predictive Biomarkers of Epilepsy Seizures, the third challenge, awarded five prizes totaling $75,000. Awardees proposed a predictive biomarker or panel of biomarkers to identify people at risk for SUDEP. The biomarker(s) serve as an endpoint or surrogate endpoint that will drive human SUDEP interventions. Read about the winners of the third challenge.

The fourth and final challenge, worth $1 million, will be to prove the biomarker can indeed predict the risk for SUDEP and serve as an intervention for seizures that compromise cardiac or respiratory function.

These challenges allow us to take advantage of interdisciplinary approaches and alternative perspectives. Through combining and contrasting ideas, the best and most valuable solutions will be identified and financially supported.

Anyone can be a part of the $1 million SUDEP solution. We encourage you to enter or promote the challenge or donate toward the $1 million prize.

The Fourth Challenge: Developing Predictive Biomarkers of Epilepsy Seizures

Launched August, 2016; Closes October 10, 2020
Award: $1,000,000
Enter the Developing Predictive Biomarkers of Epilepsy Seizures Challenge Here

Epilepsy Foundation SUDEP Institute is sponsoring a Reduction-to-Practice Challenge to develop a predictive biomarker or panel of biomarkers to identify people at risk for SUDEP or seizures that compromise cardiac or respiratory function. The biomarker(s) must serve as an endpoint or surrogate endpoint that will drive human SUDEP interventions. For example, the biomarker(s) may identify a high-risk patient group that could be used to test existing candidate interventions such as seizure detection devices.

The challenge will have three milestones.

  • Milestone one, which closes October 10, 2016, requires a detailed project plan of the proposed solution.
  • Milestone two will close on October 10, 2017, and involves the production of proof-of-concept data.
  • Milestone three will close on October 10, 2020, and requires results that demonstrate the predictive efficacy of the biomarker(s). Milestone three submissions will be reviewed as they are received and, at the discretion of the SUDEP Institute, the first submission that meets all of the challenge criteria will be awarded the prize.

The SUDEP Institute intends to make up to 10 awards from a total award pool of $100,000 for milestone one, up to four awards of $25,000 each for milestone two, and a final award of at least $800,000 for successful completion of milestone three.

Click here to learn more and register.

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The Third Challenge: Predictive Biomarkers of Epilepsy Seizures

Launched February 25, 2016: Enrollment closed May 24, 2016
Award: $15,000 per winning solution
Press Release Announcement

Among those living with epilepsy, nearly one-third have ongoing seizures despite existing therapies. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled, the risk of SUDEP increases to more than 1 out of 150. SUDEP is the leading cause of death in young adults with uncontrolled seizures.

In order to accelerate the identification of effective treatments for SUDEP, the Epilepsy Foundation SUDEP Institute challenged Solvers to propose a predictive biomarker or panel of biomarkers to identify people at risk for SUDEP. The biomarker(s) must serve as an endpoint or surrogate endpoint that will drive human SUDEP interventions. For example, the biomarker(s) may identify a high-risk patient group that could be used to test existing candidate interventions such as seizure detection devices in a clinical trial.

Over 400 participants registered for the challenge, and they submitted 48 solutions from 22 countries.

The Winners

Five solutions were each awarded $15,000.

  • João Ferreira from Portugal proposed using cortisol levels to predict SUDEP and seizures that compromise cardiac or respiratory function.
  • Dr. Dorian Aur from Canada recommended the assessment of data from multiple systems in the body that may identify risk markers.
  • An American team composed of Jeffrey McDonald, Patrick Luckett, and Dr. Lee Hively suggested the development of a new seizure prediction algorithm coupled with a small portable EEG sensor to predict seizures.
  • Dr. Kelly Clancy from Switzerland described using a method to measure oxygen in the blood to identify risk based on correlation with EEG and EKG measurements.
  • Carolina Ciumas, MD, PhD, also from Switzerland, proposed the use of structural and functional MRI imaging of the brainstem as a predictor of SUDEP risk.

“I realized that this was the opportunity to not only prevent SUDEP, but also to provide more independence to patients,” João Ferreira explained. “So I focused on a solution where both doctor and patient could assess the risk of SUDEP. This should create self-awareness and mitigate patient’s anxiety in addition to SUDEP prevention.”

“My wife and I have a friend whose daughter has suffered with epilepsy for decades. Medications have not helped her much, and she is not a suitable candidate for epilepsy surgery,” said Dr. Hively. “I realized in 1994 that a much better solution is forewarning of an impending epileptic event. I obtained funding to analyze scalp brain-wave data. By the time I retired in 2014, I had obtained 10 U.S. patents on event forewarning from such data. Since my retirement, I've continued working on the problem, and now have further improvements, which were sketched in our InnoCentive proposal.”

“My father is a pediatric neurologist who specializes in epilepsy. It's a disease I've been in contact with and thinking about since I was a child,” said Dr. Clancy. “Sometimes my father's patients--children my age, just like me--would die unexpectedly, and it was very shocking, very heartbreaking, and mysterious. I've always wanted to help solve this mystery.”

When asked why he focused on his particular solution as a method to prevent SUDEP, Dr. Aur told us, “Reliable predictions of seizures and SUDEP are a matter of life and death for many people with epilepsy. [The challenge] was a new theoretical development regarding the occurrence of seizures that revealed a biophysical mechanism directly involved in seizure generation. Dangerous seizures often appear to be unpredictable events, and I strongly feel that moving forward with a reliable solution will allow us to prevent such events.”

The Second Challenge: Preventing Epilepsy Seizures

SUDEP Challenge Winner Seal

Launched August 14, 2015; Enrollment closed October 13, 2015
Award: $30,000

A widespread lack of awareness and ongoing fear and discrimination lead many individuals to hide their epilepsy and to accept ongoing seizures instead of seeking out more effective treatments. Additionally, because they do not understand that epilepsy can be life threatening, many do not adhere to their treatment plan to obtain complete seizure control – which means having zero seizures. Many individuals with epilepsy may not achieve maximal seizure control because of lack of access to best therapies, poor adherence to prescribed therapies, or lifestyle factors that may provoke seizures. These circumstances and behaviors increase their risk of continued seizures, injuries, and SUDEP.

The Epilepsy Foundation SUDEP Institute challenged Solvers to come up with ideas for a method/intervention to reduce the risk of seizures, especially convulsive or tonic-clonic seizures, with the purpose of preventing SUDEP. Over 300 solvers registered for the challenge, submitting 83 solutions from 25 countries.

The Winner

The Epilepsy Self Monitoring (EpSMon) mobile app was the winning solution for the second challenge, “Preventing Epilepsy Seizures.” This app was designed to help people with epilepsy monitor epilepsy activity between doctor visits, determine if they are at risk of a seizure, and give information on how to decrease their risk.

“People living with epilepsy rely on tools like EpSMon to help monitor seizure activity,” said Philip M. Gattone, CEO and president of the Epilepsy Foundation. “EpSMon also reminds users of the importance of following their treatment to help avoid potentially tragic consequences.“

We are excited to work with the EpSMon partners: Plymouth University in collaboration with SUDEP Action, Cornwall Foundation Trust, and Royal Cornwall Hospitals NHS Trust to bring this powerful tool to the U.S. iTunes and Play stores.

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The First Challenge: Empowering People with Epilepsy

Launched June 10, 2015; Enrollment closed July 13, 2015

The Epilepsy Foundation SUDEP Institute is determined to decrease the number of lives taken by epilepsy and to empower people with seizures. The first SUDEP Challenge asked Solvers to come up with ideas for a creative advocacy campaign to encourage people with seizures and epilepsy to seek optimal seizure control and to educate themselves and their families about SUDEP and how they can mitigate its risks. In addition, the Challenge asked Solvers to invite the broader health care community to talk about SUDEP, understand the importance of not accepting ongoing seizures, and pursue all effective treatment options.

More than 300 people registered on the InnoCentive global marketplace. Ultimately, a total of 90 solutions were submitted from entrants in more than 50 countries. Solvers included people living with epilepsy, bereaved family members, doctors, nurses, communications experts, and many more.

The Winners

  • The first prize of $10,000 was awarded to Chad Spencer of Smithfield, Utah.
  • A $2,500 prize was awarded to a team comprised of Jenna Brooks of Alexandria, Va., and Lizzette Vidal-Alicea of Fairfax, Va.
  • Another $2,500 prize was awarded to a team with six members: Mackenzie Beer and Steven Ebert of Richmond, Va.; Candace Faircloth of Virginia Beach, Va.; Scott Menzie of Waynesville, N.C.; Sunny Sun of Berkeley, Calif.; and Eden Mesfin of Concord, Calif.

"I chose to participate in this challenge because of the opportunity to possibly help someone improve the treatment of their epilepsy," said prize winner Chad Spencer. "It made me think about how to get people to talk about epilepsy, and that leads to what can be done about it."

"My grandmother suffered from moderately controlled, tonic-clonic seizures, so the challenge is very near and dear to my heart. She passed away very unexpectedly and my family is still uncertain as to the root cause of her death," said prize winner Jenna Brooks. "I felt inspired by this challenge, because I believe that if my grandmother had a greater awareness of SUDEP, seizure risks and prevention measures, regular access to resources and tools, and a support network of individuals who were also living with epilepsy, it would have improved her quality of life and quite possibly could have saved her life."

"I’ve never felt more helpless than I did when I saw someone I love have a seizure. There’s not much that anyone can do in that moment," said prize winner Mackenzie Beer. "But we believe a huge degree of danger lies in not being able to talk about it afterwards. We hope this campaign provides an accessible language to talk about it. We hope it arms people with a tangible and immediate way to understand what’s happening during a seizure. We hope it illuminates a place where people can turn to if they ever need support."

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Background

SUDEP Challenge Workshop

On April 10, 2015, the Epilepsy Foundation SUDEP Institute hosted a SUDEP Challenge Workshop that brought together an amazing team of epilepsy and SUDEP experts to begin developing challenges around SUDEP.

The Epilepsy Foundation SUDEP Institute engaged InnoCentive, a global innovation marketplace that crowdsources ideas and solutions to important business, social, policy, scientific, and technical challenges from an international pool of more than 350,000 Solvers. The Epilepsy Foundation will host at least three challenges on the InnoCentive site over the course of a year to find solutions to the key challenges in predicting and preventing SUDEP.

“We are proud to partner with the Epilepsy Foundation SUDEP Institute to reach across a worldwide crowd for help in formulating educational campaigns to help people and their families who sometimes struggle with the challenges of this disease. We have previously had great success in adding to the wisdom of diagnoses, treatment alternatives, and public health campaigns associated with major diseases,” said InnoCentive Chairman and CEO Craig Jones.

The Epilepsy Foundation is hosting four challenges on the InnoCentive site over the course of a year to find solutions to the key challenges in predicting and preventing SUDEP.

SUDEP Challenge Workshop

SUDEP Challenge Workshop Participants (left to right): Dario Dieguez, Roch Doliveux, Sam Lhatoo, Renato Vasconcelos, Steve White, Dale Hesdorffer, Warren Lammert, Catherine Covington, Cyndi Wright (Participants not pictured Dan Friedman, Orrin Devinsky, and Jan Buelow)

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Authored by: Cyndi Wright on 4/2015
Reviewed by: Cyndi Wright on 4/2016
2016 Pipeline Conference Presentation

Cyndi Wright, director of the Epilepsy Foundation SUDEP Institute, talks about the $1 million challenge initiative at the Epilepsy Foundation Pipeline Conference on February 26, 2016.

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Anyone can be a part of the SUDEP Challenge Initiative; even if you don’t enter the challenge, we encourage you to promote the challenge or donate toward the $1M prize

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