Epilepsy research needs reach across the missions of multiple NIH Institutes and Centers and across many organizations outside the NIH. As the primary NIH Institute for epilepsy research, NINDS leads this working group, with broad representation from the NIH, other Federal agencies, and the research and patient advocacy communities. Annual meetings provide a forum for sharing information about ongoing and planned epilepsy research activities, highlighting advances and discussing needs and opportunities, and promoting increased collaboration toward common research goals.
Location:
Neuroscience Center, 6001 Executive Blvd, Bethesda, MD
Conference Room A
Hosted by NINDS
Related Resources
Agenda and Presentations
| Time | Agenda Item |
|---|---|
| 8:45 AM | Arrival/Registration |
| 9:00 AM – 9:10 AM |
Welcome & Introductions |
|
Session I: ICARE Member Research Updates |
|
| 9:10 AM – 9:40 AM | NINDS/NIH(pdf, 2773 KB) Dr. Walter Koroshetz, MD; Director |
| 9:40 AM – 10:00 AM | CURE(pdf, 2120 KB) Laura Lubbers, PhD, Chief Scientific Officer, CURE |
| 10:00 AM – 10:20 AM | Dravet Syndrome Foundation(pdf, 2274 KB) Nicole Villas, Scientific Director, DSF |
| 10:20 AM – 10:40 AM | BREAK |
| 10:40 AM – 11:10 AM | Epilepsy Foundation - Data Commons Initiative(pdf, 1067 KB) Sonya Dumanis, PhD, Senior Director of Innovation, EF |
| 11:10 AM – 11:30 AM | Seizure Tracker - A Data Resource to Improve Clinical Trial Design(pdf, 1151 KB) Robert Moss, Co-Founder Seizure Tracker |
| Session II: ICARE Research Portfolio Analysis Update | |
| 11:30 AM – 11:50 AM | ICARE Epilepsy Research Portfolio Analysis 2013-2017(pdf, 843 KB) Miriam Leenders, PhD, Program Director, Division of Neuroscience, NINDS |
| 11:50 AM – 1:00 PM | LUNCH |
|
Session III: Progress Towards the Recommendations from the 2012 IOM Report "Epilepsy Across the Spectrum" |
|
| 1:00 PM – 1:10 PM |
Introduction - "Epilepsy Across the Spectrum" IOM Report and Recommendations(pdf, 591 KB) |
| 1:10 PM – 1:30 PM |
Data Collection on the Burden of Epilepsy, and the Managing Epilepsy Well Network(pdf, 1343 KB) |
| 1:30 PM – 1:50 PM |
Care Coordination and Telehealth(pdf, 423 KB) |
| 1:50 PM – 2:10 PM |
Education Efforts for Professionals(pdf, 671 KB) |
| 2:10 PM – 2:30 PM |
A Learning Healthcare System for Epilepsy(pdf, 1489 KB) |
| 2:30 PM – 2:50 PM |
Epilepsy Leadership Council(pdf, 261 KB) |
| 2:50 PM – 3:10 PM |
Epilepsy Foundation Progress in Promoting Health and Understanding |
| 3:10 PM – 3:40 PM | Discussion |
| 3:40 PM – 3:45 PM | Wrap-up and Adjourn |