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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

National Batten Disease Registry

Address

New York Institute for Basic Research in Developmental Disabilities
1050 Forest Hill Rd
Staten Island, NY 10314
USA

Phone

718-494-5201

Fax

718-982-6346

800 Number

800-952-9628

TDD

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Email Address

BattenKW@aol.com

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.

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