Collaborative Patient-Centered Rare Epilepsy Network (REN)

Details and Information

Visit the REN Website and Enroll in REN

Areas of Focus: Rare epilepsies/epileptic encephalopathy

Population Characteristics: Pediatric

Organization: REN includes over 25 rare epilepsy organizations

Contact: [email protected] and [email protected]

Principal Investigator: Brandy Fureman, PhD

Co-Principal Investigators: Barbara L. Kroner, PhD and Dale Hesdorffer, PhD

About REN Network

The Rare Epilepsy Network (REN) has been created by and for patients with catastrophic rare epilepsies. Our goal is to provide the affected person and their families an opportunity to participate in research that will improve the lives and quality of care for people with rare epilepsies. The REN has established a registry which includes data from the affected person mostly entered by their caregiver in order to conduct patient-centered research. This research includes natural history and risk factor studies, and in the near future, there will be opportunities for enrolled individuals or their caretakers to take part in studies proposed by other researchers in PCORnet. Twenty six rare epilepsy organizations, Epilepsy Foundation RTI International, Columbia University, and a physician Professional Advisory Board partner with us, creating engagement strategies and discussing possible studies as diverse stakeholders. The REN enrollment is currently more than 1,000 with 93% caregiver entered data and 7% cognitively able adults: these people are distributed according to the distribution of pediatric neurologist in the United States and are mostly Caucasian, with family incomes above $100,000.

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Last updated on July 11, 2017