Rare Epilepsy NetworkPublic Group active 22 hours, 3 minutes ago
The Rare Epilepsy Network, or REN for short, is a collaboration between the Epilepsy Foundation, RTI International, Columbia University, and many different organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures. The REN hosts a registry of these patients which includes patient or caregiver-reported data in order to conduct patient-centered research. Currently this research is in the form of natural history studies and completion of surveys. The registry will also create the infrastructure for future research such as clinical trials. All of the research will be patient-centered, which means it will address research questions and topics that are important to the patients and caregivers with the ultimate goal of having patients and caregivers better able to participate in healthcare decisions.