About the Rare Epilepsy Network

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.

If you are interested in enrolling in the registry and meet the eligibility criteria above, click Enroll to begin.

About the Researchers

Dr. Brandy Fureman
Dr. Brandy Fureman
Principal Investigator
Brandy Fureman is the Vice President of Research and New Therapies at the Epilepsy Foundation of America (EFA). Prior to joining the EFA, Fureman was Program Director for Epilepsy in the Channels, Synapses and Circuits cluster at the National Institute of Neurological Disorders and Stroke (NINDS).

Fureman was responsible for overseeing a diverse portfolio of epilepsy research awards, including clinical trials, translational projects, basic science research, and training grants. She was also responsible for identifying epilepsy research issues critical to NINDS and NIH and taking programmatic action through creation of focused funding opportunities such as the Epilepsy Centers Without Walls program, resource development including the NINDS Common Data Elements for Epilepsy, Curing the Epilepsies conferences and multiple workshops to address the needs in the field. Fureman coordinated the Institute's Epilepsy Research Benchmarks strategic planning process in collaboration with the American Epilepsy Society.
Dr. Dale Hesdorffer
Dr. Dale Hesdorffer
Co-investigator
Dr. Hesdorffer's work is divided between studies of convulsive disorders and studies of traumatic brain injury. Recently, her focus is on the co-morbidity of epilepsy and psychiatric disorders through a study of incident unprovoked seizures and epilepsy in Iceland. For the past five years, she has been the PI of an NIH-funded study of the epidemiology of brain abnormalities among children with febrile seizures, and currently leads a related subcontract for study of outcomes following febrile status epilepticus. Most recently, she has embarked on a CDC-funded study of the incidence of unprovoked seizures and epilepsy in Washington Heights and Inwood.
Dr. Barbara Kroner
Dr. Barbara Kroner
Co-investigator
Dr. Kroner is an established epidemiologist and clinical coordinating center principal investigator, with expertise in study and survey design, patient recruitment, and biospecimen collection. She is currently the PI on an NIH-funded study of thoracic aortic disease among persons with rare syndromes and a CDC-funded study of childhood-onset epilepsy. She is also the co-PI on a grant to develop a mobile seizure alert device known as esap. Dr. Kroner has a child with Aicardi syndrome, one of the rare epilepsy syndromes included in the REN, and is active in the patient advocacy community.