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Unique Research Consortium Founded Accelerates Research into Rare Childhood Disease of RE
Removing Half the Brain is Only Treatment for Neurological Disease That Strikes Otherwise Healthy Children - New Research Consortium Accelerates Research into Rare Disease
By: RE Children's Project
“The goal of the RE Children’s Research Consortium is to make clinical information as well as brain tissues and biological samples more available for research purposes directed towards RE,” said Seth Wohlberg, founder of the RE Children’s Project. Wohlberg went on to note that the RE Children’s Research Consortium is the first of its kind that encourages research institutions and hospitals to work collaboratively to create a virtual repository for clinical information, brain tissue, biological samples (e.g., blood cells, plasma/serum or cerebrospinal fluid), that can then be compared and generally available to others in the Consortium.
“The creation of a Research Consortium is a major step towards finding some commonality between RE patients,” said Dr. Gary Mathern, professor of Pediatric Neurosurgery and director of the UCLA Pediatric Epilepsy Program, Mattel Children’s Hospital, and one of the Consortium’s founding members.
“The sharing of brain tissue and other biological samples from RE patients and then virtually sharing that information with other physicians and researchers can only bring us closer to understanding the possible triggers that cause RE and other ailments like epilepsy, and then ultimately, a cure for these diseases,” said Dr. Frances Jensen, Director of Epilepsy Research in the Department of Neurology at the Children’s Hospital Boston and the current President of the American Epilepsy Association.
The goal of the Consortium is to expand the Consortium and enlist all research organizations, both US-based and global, to focus on research studies to find the cause of RE and design potential treatment approaches. The Consortium will provide resources and help to coordinate such research efforts by coordinating the use of RE related clinical information, tissues and biological samples or advanced diagnostic testing capabilities and facilities.
“We see the RE Children’s Research Consortium as a way for researchers and physicians throughout the world to share knowledge, resources and breakthroughs with the main goal to identify the cause of RE and focusing on potential treatments,”
RE typically affects previously normal children between the ages of two and fifteen years old; it rarely affects adults. The disease process typically runs its course over a one to two year period during which time one half of the body function is rendered useless and epileptic seizures continue unabated. An unusual feature of the disease is that it is usually confined to one hemisphere of the brain and is resistant to standard anti-seizure medicines. The only known "cure" is a cerebral hemispherectomy — the removal or disconnection of the affected side of the brain. This radical surgery has been the standard form of treatment for more than 50 years. Recent progress in understanding of the disease, and the emergence of therapies that slow disease progression and help control symptoms, has led some researchers to believe that more targeted and effective medical treatments are potentially within reach.
The Wohlberg family founded the RE Children’s Project after their daughter Grace, who in 2008 and only ten years old, started to experience epileptic seizures. After months of testing, her parents learned that she had the extremely rare neurological disorder of RE. Grace underwent an initial hemispherectomy surgery in February 2009. However, her seizures recurred so her parents then brought Grace to UCLA to complete the hemispherectomy, which was performed by Mathern in March 2010. Today, Grace is back in school readjusting to her new life with the assistance of a full-time aid. While the surgery has stopped the seizures, Grace faces lifelong disabilities that resulted from the surgery including partial blindness, cognitive issues and learning how to walk again. Since then, the foundation has sponsored cross-disciplinary research conferences and funded leading edge research around the globe focused on finding the cause and an eventual cure for RE. The organization also supports research dedicated toward the recovery process following hemispherectomy surgery.
To learn more about the RE Children’s Project and the RE Research Consortium, visit www.REChildrens.com. To learn more about the organizations involved in the RE Research Consortium, visit http://www.uclahealth.org/
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