Scroll
To Top
0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

*Important

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

7184945201

Fax

7189826346

800 Number

8009529628

Email Address

BattenKW@aol.com

Description

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.

Please Note

The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.