The Rare Epilepsy Network Registry, funded by PCORI, is now open! We will need as many families as possible to participate in order to make this successful and useful for us all. The LGS Foundation is one of the partner organizations involved in the REN, and we hope to make the most of this opportunity by providing as much information about our loved ones with LGS as we can.
This registry is unique in that it is patient-driven and patient-centered. Please take a moment to read a bit about it and consider participating and help all of those living with LGS and other Rare Epilepsies.
What is the Rare Epilepsy Network?
The Rare Epilepsy Network, or REN for short, is a collaboration between the Epilepsy Foundation, RTI International, Columbia University, LGS Foundation, and many different organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures. The REN will establish a registry of these patients which includes patient or caregiver-reported data in order to conduct patient-centered research. This research will be 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. You may stop participating in the research at any time.
Enroll now at http://ren.rti.org.