Batten Disease Registries and Databases
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