Behaviour & Education studies, USA
* The University of Rochester Medical Center has a website for their Batten Center. The official title is the “Batten Disease Diagnostic and Clinical Research Center”. The primary activities at present are focused on the CLN3 form of Batten Disease and involve: clinical care to patients in the U.S.A., clinical research with a rating scale developed to measure the course of physical disease progression over time, and development of a clinical trial. They do also see children with other genetic forms of Batten Disease, but JNCL has been the focus mainly because it is the most predominant type found in the States. Core components and objectives are:
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.
The following is a PDF version of Dr. Adams’ presentation at the 2009 BDSRA Conference, “Behavioral and Educational Strategies”. It includes general tips for managing behavioral and educational concerns that may arise in children with any form of NCL or “Batten” Disease. However, the information is not “Batten specific”. The information is also not a substitute for individualized services and care. We recommend that you consult with behavior / education specialists who know your child, before making changes to your child’s behavioral or school plan, and that any medical treatment decisions be made with input from your child’s treating physicians / treatment team. Behavioral and education strategies can be found at http://www.urmc.rochester.edu/neurology/Batten-disease-center/documents
Additional educational material can be found at http://www.bdsra.org