Highlights in Research and Innovation from the Foundation Sonya Dumanis, PhD Senior Director of Innovation
EPILEPSY FOUNDATION Our Mission: To lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. Execute the mission through: Education & Public Awareness Program Services & Public Policy Advocacy Research & Innovation
RESEARCH OVERVIEW
2007-2017, OVER $24.6 MILLION INVESTED IN ALL RESEARCH GRANTS Our research has no boundaries. We go where the science is. $3M $4M $2M $3M $1M $2M $500K $1M $300K $499K $100K $299K $50K $199K $1K $49K We also have invested over $1.4 Million abroad: Africa Asia Australia Canada Europe South America
UNMET NEED 30% of people living with epilepsy still do not have seizure control
an innovation incubator supporting early development projects to funnel new ideas into the pipeline Shaking up the system with a new approach
EPILEPSY INNOVATION INSTITUTE (EI 2 ) An innovation incubator to funnel new ideas into the clinical pipeline 1 2 3 4
EI 2 : SELECTING A TOPIC An innovation incubator to funnel new ideas into the clinical pipeline 1 People-Centric Impactful Boldly Innovative Multi-disciplinary Early Development Knowledge-Creating
OUR PROCESS FOR EI 2 An innovation incubator to funnel new ideas into the clinical pipeline Unpredictability What aspects of epilepsy impact you the most? Where should researchers focus? What is your biggest frustration with epilepsy? What is your biggest hope for epilepsy in the next 5 years?
MY SEIZURE GAUGE INITIATIVE Creating a forecasting seizure device Personal Utility Empowering people to manage their epilepsy Quality of life improvement, enhance safety & increase independence Clinical Utility Reducing/Fine Tuning Medication Optimizing Closed-Loop System Therapies Technical Utility Biomarker Diagnostic Implications Big Data-omics Implications
MY SEIZURE GAUGE Could it Be Possible? 65-100% accuracy in algorithms (Cook et al., 2013)
2014 CROWD-SOURCING CHALLENGE KAGGLE COMPETITION FOR SEIZURE DETECTION Co-Sponsored the Seizure Detection Challenge for intracranial recordings from dogs and intracranial recordings from patients in the Neurovista Trial
2014 CROWD-SOURCING CHALLENGE KAGGLE COMPETITION FOR SEIZURE PREDICTION Above Chance Algorithms for Seizure Forecasting
Advances in Research Teens Speak Up
2012 MIT Studies GTC Seizures are more accurately detected combining EDA + motion
EEG + BIOSENSORS + DEEP MACHINE LEARNING
EI 2 : DEFINING THE CHALLENGE An innovation incubator to funnel new ideas into the clinical pipeline 2 Dumanis et al. (2017) Seizure Forecasting from idea to reality Outcomes of the My Seizure Gauge Epilepsy Innovation Institute Workshop. eneuro 1.5 Day Workshop in DC 50 Attendees with an emphasis on bringing outside people in: IBM Verily (Google Life Sciences) Lawrence Livermore Labs MDIC (Medical Device Innovation Consortia) Eccrine Systems (Sweat Sensing Technology Company)
EI 2 : DEFINING THE CHALLENGE Assessing the state of the science for a My Seizure Gauge Challenge 1. Seizures have non-random time patterns on multiple time scales ultraradian, circadian, and multidien (multi-day) time scales, 2. Multimodal analysis of seizure events coupling EEG with non-eeg measures can enhance seizure forecasting algorithms, 3. Individualization and personalization of a seizure forecasting algorithm is necessary, 4. An open-source platform for multimodal data integration, analysis and collaboration agnostic of device will catalyze the field forward, 5. Engagement with all stakeholders early in the process is necessary, and 6. The timing is right to move forward with seizure forecasting.
EI 2 : NEXT STEPS My Seizure Gauge Initiative 3 4 Bringing Big Data to Personalized Health Goal: Identify and better understand the changes in the body that may precede the onset of a seizure, at a time course that may be hours or days before the clinical (observable) seizure. Ultimate End-goal: Create a noninvasive seizure forecasting device Team Selection Review: July 6, 2018
NEXT EI2 TOPIC: MY BRAIN MAP Defining Individualized Brain Networks to Enhance Diagnosis and Care We know people living with epilepsy are not having seizures 100% of the time. So why are seizures happening when they do? What pathways in the brain are activated in the particular moment before the start of a seizure? And what is it about a person s brain activity that activates those pathways in that specific area of the brain in that specific moment? USE-CASES FOR CHALLENGE INCLUDE: Improve surgical options and outcomes Identify brain regions critical for seizure control Optimize neurostimulation therapies Understand how consciousness is impacted
Celebrating the Stories of Our Success in EPILEPSY THERAPY PROJECT Innovation
EPILEPSY THERAPY PROJECT Founded in 2002 by Warren Lammert and Orrin Devinsky MD, the Epilepsy Therapy Project merged with the Epilepsy Foundation in 2012. The vision is to foster innovation and support scientific advancements that could result in new treatments for people with epilepsy. Most importantly, we want to get new therapies to people with epilepsy faster in a timeframe that matters! The Epilepsy Therapy Project fulfills this by: Promoting partnerships among industry, academia, investors, and physicians Providing financial support to advance promising science that could lead to better therapies Fostering innovation and entrepreneurship so novel epilepsy projects and companies can make it to people with epilepsy Providing visibility to therapies and devices in the epilepsy pipeline and increase attention to the real needs of people with epilepsy and the need for more research efforts
In clinical pipeline Now on market PREVIOUS ETP GRANTS INCLUDE THE EPILEPSY THERAPY PROJECT ACCELERATES LATE STAGE DEVELOPMENT THERAPIES ONTO THE MARKET THROUGH COMMERCIALIZATION GRANTS
BREAKDOWN OF ETP INVESTMENTS From what s currently active in the epilepsy pipeline: Diagnostics New Molecular Entities Reformulations/Enhanced Delivery Dietary Therapies 43% of those projects supported with ETP
EPILEPSY THERAPY PROJECT Case-Use Study Laser Ablation Surgery 2011 Aside from the funding, validation by ETP experts who vetted our project, and found it to be a worthwhile pursuit, has been a significant factor in our rapid progress and expansion into new centers. Ashok Gowda, PhD, Founder of Visualase, Inc, acquired by Medtronic in 2014, President & CEO BioTex, Inc.
Transforming research with your support EPILEPSY THERAPY PROJECT
WAYS TO GET INVOLVED Participate in the Rare Epilepsy Network (REN) REN is focused on addressing the urgent health challenges of our rare epilepsy community by engaging people impacted by epilepsy and their families to enroll in a registry with the ultimate aim of investigating causes and consequences to improve diagnosis, treatment, and find cures. Ren.rti.org
WAYS TO GET INVOLVED Participate in a Clinical Trial We recently launched a clinical trials portal to help people find clinical trials that may be of interest to them. The Portal also provides links to educational materials about what participation in different levels of clinical research entails, and what questions to ask when considering study participation. www.epilepsy.com/clinical_trials
WAYS TO GET INVOLVED Use a Seizure Diary My Seizure Diary is designed as a selfmanagement tool. It helps people record, track, and manage their seizures, treatments and other health events. Recently, we added a research component. If you want to get involved, your anonymized data will be combined with others to help us gain new insights on seizure patterns across epilepsy populations. diary.epilepsy.com
WAYS TO GET INVOLVED Participate in Surveys We use surveys to guide our strategic priorities Epilepsy Innovation Institute Clinical Trials Portal Development Want to also help us design better surveys? Contact: sdumanis@efa.org
WAYS TO GET INVOLVED Be part of the Learning Healthcare System We are developing a roadmap for how highquality epilepsy care and research can be done to improve outcomes for every person with epilepsy, and uses continuous cycles of improvement to get there. The voices of people with epilepsy and their loved ones are critical for this effort. Therefore, we have established a community engagement core to be part of the design process Contact: Kathleen Farrell kfarrell@efa.org
Research Overview EPILEPSY THERAPY PROJECT
GLOBAL IMPACT Since 2007, the national office has invested over $24.5M worldwide to support The developing workforce Investments in new therapies, and Developing new diagnostic tests for epilepsy care We have invested in over 40% of the epilepsy pipeline therapies We supported over 235 researchers/clinical fellows We are expanding our programs to focus on higher-risk projects LOCAL IMPACT Since 2007, the national office has invested over $500,000 in Michigan to support: the developing workforce, and developing new diagnostic tests for epilepsy care.
GOVERNMENT FUNDING COMPARED TO OTHER NEUROLOGICAL DISORDERS May M. Epilepsy. (2014) Nature Outlook.
EPILEPSY RESEARCH FUNDING FROM NONPROFITS LAGS BEHIND OTHER NEUROLOGICAL DISORDERS Top Nonprofits: $74.5 Million Top Nonprofits: $5.5 Million $161 Million $157.9 Million Parkinson s Disease EPILEPSY
www.epilepsy.com/research Thank You