Philip Gattone
President and CEO, Epilepsy Foundation

Warren Lammert
Chair of the Board of Directors, Epilepsy Foundation

In 2013, the Epilepsy Foundation (EF) received an award from the Patient Centered Outcomes Research Institute (PCORI), a public-private off-shoot of the 2008 Affordable Care Act. The award is part of an ambitious PCORI program to build patient-driven data bases and data systems and to increase research initiatives including comparative-effectiveness research and clinical trials. Thus is it not surprising that the award is meant to facilitate a patient-powered research network (PPRN). Because the EF is collaborating with 10 national organizations dedicated to rare forms of epilepsy, as well as the Research Triangle Institute and Columbia University, the project sponsored by the award is entitled the Rare Epilepsy Network (REN). Nationwide, PCORI gave 18 PPRN awards to patient-centered groups that included foundations like the EF, universities, and other small organizations that specifically represent patients. Along with PPRNs, PCORI sponsored 11 clinical data research networks (CDRN) that consist of large systems. All these awards have the potential to develop critical new information that will improve the quality of lives of those persons with chronic disorders, which is perfectly consonant with EF’s mission for people with epilepsy.

The EF PPRN award is unique because it represents a partnership among multiple groups, some of which because of their size might not otherwise be able to participate in national research. EF principal investigator Dr. Janice Buelow is joined by Dr. Dale Hesdorffer from Columbia University and Dr. Barbara Kroner from RTI (Co PIs). This team is working to organize a data-base that will house patient- and caregiver-driven and -entered data. Each part of the team has a critical role. RTI has built and will host the data-base, Columbia will manage the data and construct the survey that we will be using, and the EF is administrating the grant and building the sustainability program. Equally important is the partnership of the 10 rare-epilepsy organizations. In fact, the initial vision for the sponsored program was driven by the seven rare-epilepsy groups: Aicardi Foundation, Dup15q, Phelan-McDermid, TS Alliance, Dravet, Hope for Hypothalamic Hamartoma, and Lennox-Gastaut. Since the initial application, CDKL5, PCDH19 Alliance, and Aarons Ohtahara have joined the cause. Each of these organizations represents a rare epilepsy. Each bring different strengths to the ability to research disorders that often do not receive enough attention. We view this as a continued step of the Institute of Medicine report, Epilepsy Across the Spectrum, as the REN is an initiative that is seeking to foster cooperation and efficient use of resources. The entire rare epilepsy community will benefit from this alliance of organizations as we foster patient driven data in the rare epilepsies.

The PCORI award represents a new direction for the Epilepsy Foundation, which desires partnerships in order to work collaboratively with other organizations to build better lives for people with epilepsy. The mission of the Epilepsy Foundation is to stop seizures and sudden unexpected death in epilepsy (SUDEP), and overcome the challenges created by epilepsy through efforts including education, advocacy, and research. We want to accelerate the process of moving ideas into therapies. The PCORI data-base is one of many programs that address our mission. Because of this award, the EF is now building a Rare Epilepsy Institute to continue our work with all of these organizations and provide sustainability for the REN. We are pleased and happy to have this opportunity to collaborate. Check back for reports on this program’s progress, and for more details of the Rare Epilepsy Network, please visit the EF REN website (Epilepsy.com/ren). If you know of someone who has a loved one with one of the diagnoses mentioned and think they might like to participate please give them the website information, or email address (ren@efa.org) or phone number (888-886-3745).

In Epilepsy & Behavior; October 2014; 39: 65.

Reprinted with permission from Epilepsy & Behavior, Elsevier for Editorials.