Surgery may be the only recourse for some children with intractable seizures. The UCLA Rare Epilepsies & Brain Disease Tissue Bank (REBDTB) collects and banks remnant brain tissue, blood, cerebrospinal fluid (CSF) and other biological material from planned epilepsy surgery cases, connecting patients and families with researchers dedicated to understanding the molecular mechanisms underlying intractable epilepsy in children. The REBDTB is working collaboratively with epilepsy centers and research institutions around the world to accelerate the pace of research towards developing new treatments that will replace the need for surgery. Rasmussen encephalitis (RE), Hemimegalencephaly (HME), Focal Cortical Dysplasia (FCD), Tuberous Sclerosis Complex (TSC) and all other rare epilepsy disorders may be candidates for surgery.
Rare Brain Diseases are those which affect a small number of individuals, typically less than 1:1000 individuals in the United States. For example, with Rasmussen encephalitis (RE) only two to three cases at most may be seen at an active epilepsy surgery center per year. One of the major challenges to identifying the causes of these disorders is the limited number of tissue and biological samples available to researchers for scientific analysis. The purpose of the REBDTB is to collect biological specimens for research from Rare Brain Diseases that go to surgery worldwide. The goal is to acquire a sample of blood and cerebrospinal fluid (depending upon the surgical approach), and involved brain tissue from the area of planned resection that may otherwise be discarded per institutional guidelines. Through this international effort it is hoped that the pace of research will be accelerated, ultimately leading to improved diagnosis and treatment of patients in the future. The REBDTB is available as a resource for patients and families who wish to donate these biological samples in order to advance research. Participation in the tissue banking does not change the amount of tissue that is removed during the planned procedure, and there is no cost to donate. All the logistics are handled by the Tissue Bank Coordinator at UCLA. The Rare Epilepsies & Brain Disease Tissue Bank is currently involved in ongoing research projects studying Rasmussen encephalitis (RE), Hemimegalencephaly (HME), Focal Cortical Dysplasia (FCD), Tuberous Sclerosis Complex (TSC), and all other etiologies leading to surgery for epilepsy.