Collaborative Patient-Centered Rare Epilepsy Network (REN)
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.