University of Rochester Batten Center
Many children are given a preliminary diagnosis of Batten disease. Having a center that can provide accurate diagnosis and clinical management of all forms of Batten disease will expedite the development and refinement of the clinical tools necessary for the evaluation of the progression of these devastating diseases.
The Batten Center at the University of Rochester has the following core components and objectives:
1. Genetic diagnosis of Batten disease.
2. Clinical evaluation of Batten disease.
3. Continued development of the UBDRS, a clinical rating scale for Batten disease
5. Interaction with current research into Batten disease.
6. Development and design of clinical trials for JNCL.
Clinical Trial for Children with Juvenile Neuronal Ceroid Lipofuscinosis (JNCL)
The University of Rochester Medical Center is currently recruiting subjects with JNCL for a clinical trial. This research study will focus on evaluating whether an investigational drug is safe and well tolerated in children with JNCL. Mycophenolate mofetil (also known as Cellcept) is a medication that suppresses the immune system. The study is 22 weeks long with a total of 12 study visits. Four visits require travel to University of Rochester Medical Center in Rochester, New York. Four visits will be with your child’s local physician. Four visits will take place by telephone. Travel costs will be covered by the study. Children enrolled in the study will take mycophenolate syrup twice a day, and will have blood drawn at each study visit.
First Controlled Clinical Trial for Juvenile Batten Disease to Start
Follow this link to the story broadcasted on 7/2/2011 from YNN Rochester:
Follow this link below to the full story from the University of Rochester:
Batten Disease Center of Excellence
University of Rochester Medical Center has been named Batten Disease Center of Excellence by the Batten Disease Support and Reseach Association (BDSRA).
Lance Johnston, Executive Director of the BDSRA, awarding Dr. Jonathan Mink with the Batten Disease Center of Execellence plaque. See close up below.
"Excellence is never an accident; it is the result of high intention, sincere effort, intelligent direction, skillful execution and the vision to see obstacles as opportunities."
Please see the following link for the full story:
URMC Named Batten Disease Center of Excellence
Batten Study Group
601 Elmwood Ave
Rochester, NY 14642
(directed to Amy Vierhile)