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.
Clinical Services include:
- Genetic diagnosis for Batten disease
- Clinical consultation for Batten disease
- School and behavioral support consultation
- Education about Batten disease
Research activities include:
- Continued development of the Unified Batten Disease Rating Scale (UBDRS), a disease-specific clinical rating scale.
- Collaboration with other investigators (e.g., Batten Disease Support and Research Association)
- Development of clinical trials for Juvenile Batten disease (JNCL)
* 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)