The RE Children’s Project Releases New Manual For Tissue And Fluid Sample Collection
Newly Developed Protocol Calls Upon Research Organizations to Focus Studies and Design Treatment Approaches to Cure Rasmussen’s Encephalitis
NEW YORK, Oct. 22, 2012 /PRNewswire-USNewswire/ — The RE Children’s Project, a non-profit, 501(c)3 organization dedicated to finding a cure for Rasmussen’s Encephalitis (RE), today announced the release of a protocol manual that addresses the transfer of tissue and fluid samples following hemispherectomy surgery. Rasmussen’s Encephalitis is an extremely rare inflammatory disorder that causes severe intractable epilepsy and neurological deficits in children and young adults, for which a cerebral hemispherectomy — the removal or disconnection of the affected side of the brain — is the only effective treatment.
The first of its kind, this step-by-step manual establishes protocols that are intended to standardize the pre-operative and post-operative handling and processing of tissue and fluid samples following a hemispherectomy. The manual will aid in instructing neurosurgeons on how to properly extract Rasmussen’s tissue, store, and ship it for research purposes.
The manual was created by Joseph Voros, MPH, RE Children’s Consortium research coordinator at Johns Hopkins School of Medicine in coordination with the Mattel’s Children’s Hospital, University of California at Los Angeles.
“The RE Children’s Research Consortium Protocol Manual for Tissue and Fluid Sample Collection is a first-of-its-kind protocol, and we are hopeful that its introduction will enable a major step forward in our efforts to increase awareness and research funding for RE,” said Seth Wohlberg, founder and president of the RE Children’s Project. “The rarity of RE has hampered research into understanding the disease mechanism and finding new treatments, and having access to the tissue after surgery marks an important milestone in the quest to find a cure.”
The production of the manual is a direct outcome of The RE Children’s Research Consortium, which was established to accelerate research into RE and advance collaboration amongst the leading neurological research institutions. The group consists of research institutions and hospitals that have agreed to conduct collaborative research to find a cure for RE with the intention to make clinical information as well as brain tissues and biological samples available for research purposes. The goal is to expand and enlist all research organizations, both U.S.-based and global, to focus on research studies to find the cause of RE and design potential treatment approaches.
To learn more about The RE Children’s Project, please visit www.REChildrens.com.
Maloney & Fox
About The RE Children’s Project
The RE Children’s Project is a non-profit organization whose sole focus is promoting research into a devastating and rare epilepsy called rasmussen’s syndrome. The RE Children’s Project was founded in 2010 after Wohlberg’s daughter was diagnosed with rasmussen’s, a particularly devastating epilepsy that does not respond to medical treatment and causes paralysis of half of the body. The only treatment is a radical brain surgery that removes half the brain. Since its founding, The RE Children’s Project has funded research and sponsored research symposiums; more recently it has focused its efforts on the collection of RE tissue to advance genetic and viral analyses to gain a better understanding of RE.
SOURCE RE Children’s Project