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
Michigan Epilepsy Innovation Conference 2018
RESEARCH OVERVIEW
Michigan Epilepsy Innovation Conference 2018
Michigan Epilepsy Innovation Conference 2018
2007 - 2017, OVER $24.6 MILLION INVESTED IN ALL RESEARCH GRANTS
$3M – $4M
$1M – $2M
$2M – $3M
$300K – $499K
$500K – $1M
$100K – $299K
$50K – $199K
$1K – $49K
We also have invested over $1.4 Million abroad:
• Africa
• Asia
• Australia
• Canada
• Europe
• South America
Our research has no boundaries. We go where the science is.
UNMET NEED 30% of people living with epilepsy still do not have seizure control
Michigan Epilepsy Innovation Conference 2018
Shaking up the system with a new approach
an innovation
incubator supporting
early development
projects to funnel new
ideas into the pipeline
EPILEPSY INNOVATION INSTITUTE (EI2) An innovation incubator to funnel new ideas into the clinical pipeline
1 2
3
4
Michigan Epilepsy Innovation Conference 2018
EI2: SELECTING A TOPIC An innovation incubator to funnel new ideas into the clinical pipeline
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Michigan Epilepsy Innovation Conference 2018
• People-Centric
• Impactful
• Boldly Innovative
• Multi-disciplinary
• Early Development
• Knowledge-Creating
OUR PROCESS FOR EI2
An innovation incubator to funnel new ideas into the clinical pipeline
Michigan Epilepsy Innovation Conference 2018
• 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? Unpredictability
MY SEIZURE GAUGE INITIATIVE
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
Michigan Epilepsy Innovation Conference 2018
Creating a forecasting seizure device
65-100% accuracy in algorithms (Cook et al., 2013)
MY SEIZURE GAUGE Could it Be Possible?
Michigan Epilepsy Innovation Conference 2018
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
Michigan Epilepsy Innovation Conference 2018
2014 CROWD-SOURCING CHALLENGE KAGGLE COMPETITION FOR SEIZURE PREDICTION
Above Chance
Algorithms for Seizure
Forecasting
Michigan Epilepsy Innovation Conference 2018
Advances in Research – Teens Speak Up
Michigan Epilepsy Innovation Conference 2018
GTC Seizures are
more accurately
detected
combining EDA +
motion
2012 | MIT Studies
Michigan Epilepsy Innovation Conference 2018
EEG + BIOSENSORS + DEEP MACHINE LEARNING
Michigan Epilepsy Innovation Conference 2018
EI2: DEFINING THE CHALLENGE An innovation incubator to funnel new ideas into the clinical pipeline
Michigan Epilepsy Innovation Conference 2018
2 • 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)
Dumanis et al. (2017) Seizure Forecasting from idea to reality – Outcomes of the My Seizure Gauge Epilepsy Innovation Institute Workshop. eNeuro
EI2: 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.
Michigan Epilepsy Innovation Conference 2018
EI2: NEXT STEPS My Seizure Gauge Initiative
Bringing Big Data to Personalized Health
Michigan Epilepsy Innovation Conference 2018
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
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Team Selection Review: July 6, 2018
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NEXT EI2 TOPIC: MY BRAIN MAP
Michigan Epilepsy Innovation Conference 2018
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?
Defining Individualized Brain Networks to Enhance Diagnosis and Care
Identify brain regions critical for seizure control
Improve surgical options and outcomes
Optimize neurostimulation therapies
Understand how consciousness is impacted
USE-CASES FOR CHALLENGE INCLUDE:
EPILEPSY THERAPY PROJECT
Celebrating the Stories of Our Success in
Innovation
EPILEPSY THERAPY PROJECT
Michigan Epilepsy Innovation Conference 2018
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
PREVIOUS ETP GRANTS INCLUDE
Michigan Epilepsy Innovation Conference 2018
THE EPILEPSY THERAPY PROJECT ACCELERATES LATE STAGE DEVELOPMENT
THERAPIES ONTO THE MARKET THROUGH COMMERCIALIZATION GRANTS
No
w o
n m
arke
t In
clin
ical
pip
elin
e
BREAKDOWN OF ETP INVESTMENTS
Michigan Epilepsy Innovation Conference 2018
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
Michigan Epilepsy Innovation Conference 2018
EPILEPSY THERAPY PROJECT
Case-Use Study
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.
Laser Ablation Surgery
2011
EPILEPSY THERAPY PROJECT
Transforming research with your
support
WAYS TO GET INVOLVED
Michigan Epilepsy Innovation Conference 2018
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
Participate in the Rare Epilepsy Network (REN)
WAYS TO GET INVOLVED
Michigan Epilepsy Innovation Conference 2018
Participate in a Clinical Trial
www.epilepsy.com/clinical_trials
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.
WAYS TO GET INVOLVED
Michigan Epilepsy Innovation Conference 2018
Use a Seizure Diary
diary.epilepsy.com
My Seizure Diary is designed as a self-
management 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.
WAYS TO GET INVOLVED
Michigan Epilepsy Innovation Conference 2018
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:
WAYS TO GET INVOLVED
Michigan Epilepsy Innovation Conference 2018
Be part of the Learning Healthcare System
We are developing a roadmap for how high-
quality 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 [email protected]
EPILEPSY THERAPY PROJECT
Research Overview
GLOBAL IMPACT
Michigan Epilepsy Innovation Conference 2018
• 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
• 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.
LOCAL IMPACT
GOVERNMENT FUNDING COMPARED TO OTHER NEUROLOGICAL DISORDERS
Michigan Epilepsy Innovation Conference 2018
May M. Epilepsy. (2014) Nature Outlook.
EPILEPSY RESEARCH FUNDING FROM NONPROFITS LAGS BEHIND OTHER NEUROLOGICAL DISORDERS
Michigan Epilepsy Innovation Conference 2018
Top Nonprofits: $5.5 Million
Top Nonprofits: $74.5 Million
$157.9 Million $161 Million
EPILEPSY Parkinson’s Disease
www.epilepsy.com/research
Thank You