Batten Disease Registries and Databases

Registry: DEM-CHILD

Description: International (Europe, India) research network and registry for NCL Disorders

Coordinator: Angela Schulz, MD; Children's Hospital, University Medical Center Hamburg-Eppendorf

Registry: Clinical Registry and Tissue Bank for the Neuronal Ceroid Lipofuscinoses (NCL) Disorders

Description: Biorepository for NCL Disorders

Coordinator: Katherine Sims, MD; Massachusetts General Hospital, Boston, MA USA

Registry: NCL Mutation and Patient Database

Description: Catalogue of known mutations in genes that cause NCL Disorders

Coordinator: Sara Mole, PhD; MRC Laboratory for Molecular Cell Biology, University College London

Support for this conference was provided by:

The National Institutes of Health – National Institute of Neurological Diseases and Stroke (NIH/NINDS): 1R13 NS078981, Outcomes and Infrastructure for Phase III Clinical Trials in JNCL - Batten Disease

The University of Rochester Child Neurology Research Fund