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, 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.
What Do We Mean by “Rare Epilepsy”?
In the world of neurology, a “rare epilepsy” is a disorder or syndrome that is defined by a particular type of seizure. For example, Dravet syndrome is also known as Severe Myoclonic Epilepsy of Infancy. For the purposes of the Rare Epilepsy Network, we are including in the definition of a rare epilepsy any disorder that is rare and that is also associated with seizures or epilepsy in the majority of patients. We are also using the term epilepsy to mean the same thing as having seizures or a history of seizures.
Who is Eligible for the Registry?
Patients that are eligible for the REN Registry must have a diagnosis by a physician of a rare syndrome or disorder that is related to epilepsy or seizures in the majority of patients.
Additional eligibility criteria include:
- A patient that has had at least one seizure in their lifetime that was not caused by a fever or the direct result of a head injury. We call these types of seizures “unprovoked”.
- A patient that is at least 18 years old and can consent for themselves OR a patient of any age that is not a ward of the State and has a parent or legal guardian that can consent on their behalf.
The REN closed to new enrollments and survey completion in September 2018. It will re-open under the Epilepsy Foundation sometime in 2019.