The Unmet Need

The epilepsy community is too separated and often lacks the ability to come together to tackle issues that impact the community. We want that to change. Engage in Research

Our Solution: Promoting Engagement

We believe in creating open channels of communication between people living with epilepsy, their families, advocates, researchers, healthcare professionals, industry, and investors.

We have four research engagement programs: the Rare Epilepsy Network, the Epilepsy Learning Healthcare System, Research Rountable in Epilepsy, and the Epilepsy Foundation Pipeline Conference.

Rare Epilepsy Network (REN)

The REN has three main goals:

  • To engage people living with epilepsy and their caretakers to participate in research driven by and centered on people living with epilepsy
  • To make data available to researchers
  • To investigate causes and consequences for rare epilepsies in order to improve diagnosis, treatment, and find cures

We are proud to spearhead the Rare Epilepsy Network (REN) registry in partnership with Columbia University, Research Triangle International (RTI), and a collection of over 25 patient organizations. Currently, we have over 1,300 people enrolled.

The Epilepsy Learning Healthcare System (ELHS)

In 2018, the Epilepsy Foundation was awarded a PCORNet Learning Health System Network Pilot Collaborative grant to establish an Epilepsy Learning Healthcare System. This grant is helpig the Foundation and its partners develop the foundation of the ELHS and recruit epilepsy centers and providers throughout the country.

The ELHS will help us learn from individuals and improve care and outcomes for everyone with epilepsy and their families. The system will allow people with epilepsy and their providers to collect and share information in a standardized way. Groups of information (without any identifiying information) can be analyzed to help answer questions about:

  • Quality care - Is there a better way of doing things that can be shared among providers?
  • Diagnostic processes - What are the necessary and important tests, and how fast should they be done?
  • Comparative effectiveness of treatments - Should one treatment be the first choice, or should treatment be individualized?
  • Usefulness of self-management strategies and healthcare and community-based services - How can we ensure every person with epilepsy lives their best life?

Ultimately, this learning healthcare system will also support quality improvement projects at multiple sites, clinical trials, and observational research studies to improve seizure control for all people with epilepsy

Research Roundtable for Epilepsy

We host an annual research roundtable which brings regulators from United States (U.S. Food and Drug Administration) and Europe (European Medical Agency) with academic neurologists, non-profits, and over 20 companies to discuss regulatory issues on upcoming drug development.

Previous and upcoming topics include:

  • 2016 – Reducing Placebo Exposure in Clinical Trials
  • 2017 – Pediatric Drug Development
  • 2018 – Assessing Clinical Populations and Endpoints

Visit here to see agenda, attendees, and resulting publications.

Epilepsy Foundation Pipeline Conference

The Epilepsy Foundation Pipeline Conference brings together decision makers with a stake in the field of epilepsy treatment, therapeutic innovation, and product development.

Other Conferences

Learn more about other upcoming conferences and applying for conference support.

Authored By: 
Sonya Dumanis PhD
Authored Date: 
Reviewed By: 
Patty Obsorne Shafer RN, MN
MN and Dr. Jacqueline French | Chief Scientific Officer
Saturday, November 10, 2018