ONGOING CLINICAL TRIAL
The University of Rochester Batten Center (URBC) is currently conducting a new research study, called the JUMP study, which focuses on evaluating whether mycophenolate mofetil (also known as Cellcept) is safe and well tolerated in children with JNCL. To learn more about this clinical trial click here.
Welcome to the URMC Batten Disease Center
Batten disease is a fatal, inherited disorder of the nervous system that typically begins in childhood. Early symptoms of this disorder usually appear between the ages of 5 and 10 years, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and demented. Batten disease is often fatal by the late teens or twenties.
- National Institutes of Neurological Disorderse and Stroke
The University of Rochester Batten Center (URBC) is a comprehensive Batten disease clinical and research center at the University of Rochester Medical Center in Rochester, New York.* The URBC provides support and clinical services, contributes new knowledge, and works to find treatments that will slow, halt, or prevent disease in persons with Batten Disease.
Research activities include:
* The URBC has been recognized by the BDSRA as a Batten disease Center of Excellence.
Batten Study Group
601 Elmwood Ave
Rochester, NY 14642
(directed to Amy Vierhile)
Are you a parent or legal guardian of someone with Batten disease and interested in being contacted about the URBC and related research?
If so, click here.
Investigating Batten Disease
Dr. Jonathan Mink dicusses Batten Disease in a recently published Research Media article.
International Innovation, published by Research Media, is the leading global dissemination resource for the wider scientific, technology and research communities, dedicated to disseminating the latest science, research and technological innovations on a global level.
More information and a complimentary subscription offer to the publication can be found at Research Media's website.