National Batten Disease Registry
New York Institute for Basic Research in Developmental Disabilities
Staten Island, NY
About National Batten Disease Registry
The National Batten Disease Registry was established in 1987 to identify families affected with Batten disease and provide physicians and researchers with a computerized central data bank of vital information. Batten disease is the juvenile form of a group of progressive, inherited neurological diseases known as neuronal ceroid lipofuscinoses (NCL). It occurs mostly in families of northern European Scandinavian ancestry, and is marked by rapidly progressive vision failure and neurological disturbances, which may include deterioration of intellect. Since its inception, the registry has expanded to provide additional services for both physicians and families. The information collected by the registry is available to all researchers working on Batten disease. The registry works closely with the Batten Disease Support and Research Association (BDSRA), gathering and disseminating information on Batten disease. It provides parents with the latest medical developments, names of nearby physicians, and access to a second opinion. The registry also puts parents in contact with other families.