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Epilepsy Foundation Leads Project to Improve Understanding of Rare Epilepsies

Epilepsy News From: Thursday, March 20, 2014

Foundation Receives Patient-Centered Outcomes Research Institute Award as Part of New National Clinical Research Network

WASHINGTON, D.C., December 19, 2013 – A team led by the Epilepsy Foundation has been approved for a funding award by the Patient-Centered Outcomes Research Institute (PCORI) to develop and expand a health data network that will be part of PCORnet: the National Patient-Centered National Clinical Research Network. The Collaborative Patient-Centered Rare Epilepsy Network is one of 29 that were approved for a total of $93.5 million from PCORI on December 17 to form this new national resource that aims to boost the efficiency of health research.

During the next 18 months, the Epilepsy Foundation-led team will use the PCORI funds to create a registry of individuals with rare epilepsies and to increase patient engagement in research and health care decisions. The team will also be part of the process to develop policies governing data sharing and security and protection of patient privacy.

The Epilepsy Foundation was the leader in bringing together the following seven partner organizations on this project: Dravet Syndrome Foundation/ICE, Hope for Hypothalamic Hamartomas, Aicardi Syndrome Foundation, Phelan-McDermid Syndrome Foundation, Tuberous Sclerosis Alliance, Dup15q Alliance, and the Lennox-Gastaut Syndrome Foundation. The partnering organizations are joined by two co-investigators/epidemiologists, Dr. Dale Hesdorffer (Columbia University) and Dr. Barbara Kroner (RTI). Columbia University will design the clinical database and manage the data and harmonization. RTI will host the database and serve as the genetics and biospecimen repository. Dr. Jacqueline French, an expert on epilepsy clinical trial design and new strategies for drug approval, and director of the Epilepsy Clinical Trials Consortium, will assign epilepsy seizure type and syndrome.

The principle investigator is Dr. Janice Buelow, vice president of programs and research at the Epilepsy Foundation. Dr. Buelow most recently served as associate professor and chair of the Department of Adult Health at Indiana University's School of Nursing. She received her PhD and MS from the University of Illinois at Chicago and a BSN from Northwestern University.

"The patient-focused database created through the PCORI award will help researchers learn from families impacted by these devastating disorders," said Dr. Buelow. "It also creates an opportunity for individuals and families to be involved in finding answers."

"Rare epilepsies can be devastating for families. They primarily affect children who may experience hundreds of seizures a day and, potentially, a reduced life expectancy," said Philip M. Gattone, president and CEO of the Epilepsy Foundation. "The PCORI award is another way that the Epilepsy Foundation is furthering our mission to accelerate the development of new therapies to help people with difficult to control seizures."

In a letter of support for the PCORI application, former Congressman Tony Coelho, who is also a former chair of the Foundation's Board of Directors, noted that the project "is a great step in support of the Institute of Medicine's report Epilepsy Across the Spectrum." The project supports several of the report's recommendations, which include improving data collection and surveillance, expanding collaborative partnerships, and increasing awareness and involvement of those living with epilepsy and their families.

When creating PCORnet, PCORI envisioned a secure, national data network that improves the speed, efficiency, and use of patient-centered comparative effectiveness research (CER). By integrating data available in the 29 individual networks, PCORnet aims to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs. It will reduce the time and effort needed to launch new studies and focus research on questions and outcomes especially useful to patients and those who care for them.

"We are pleased that the Collaborative Patient-Centered Rare Epilepsy Network will be part of this exciting initiative to build the data structures needed to significantly enhance the speed and efficiency of patient-centered comparative effectiveness research," said PCORI Executive Director Joe Selby. "The process to select the awardees was very competitive and Collaborative Patient-Centered Rare Epilepsy Network demonstrated it has the expertise, resources, and commitment to engaging patients and other stakeholders to be an excellent fit in PCORnet."

The Collaborative Patient-Centered Rare Epilepsy Network was selected through a review process in which patients, caregivers, and other stakeholders joined scientists to evaluate the proposals. Applications were assessed for the capacity of their network to collect complete, comprehensive clinical data; how well they will engage patients and other stakeholders; and their ability to maintain data security and patient privacy among other criteria.

All awards are approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.

PCORI has awarded a total of $464.4 million since it began funding CER in 2012. For more information about PCORI funding, visit http://pcori.org/funding-opportunities.


About Epilepsy
When a person has two or more unprovoked seizures, they have epilepsy, which affects more than 2 million people in the United States and 65 million people worldwide. This year, another 200,000 people in our country will be diagnosed with epilepsy. Despite all available treatments, four out of 10 people with epilepsy continue to experience uncontrolled seizures while many more experience less than optimal seizure control.

About the Epilepsy Foundation
The Epilepsy Foundation, a national non-profit with 47 affiliated organizations throughout the United States, has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The Foundation works to prevent, control and cure epilepsy through community services; public education; federal and local advocacy; and supporting research into new treatments and therapies. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential. For additional information, please visit www.epilepsy.com.

"Like" the Epilepsy Foundation on Facebook at www.facebook.com/epilepsyfoundationofamerica and follow us on Twitter at www.twitter.com/epilepsyfdn.

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

Press Contacts
Judy Gretsch
Manager, Program Communications
Epilepsy Foundation
301-918-3719, jgretsch@efa.org

Christine Stencel
Associate Director of Media Relations
Patient-Centered Outcomes Research Institute (PCORI)
202-827-7707, cstencel@pcori.org

Reviewed Date

Thursday, March 20, 2014

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