title: The European Concerted Action NCL Clinical Case Registry.
abstract: A European NCL Clinical Case Registry has been set up in London, as part of a European Union-funded Concerted Action project. Concerted Action participants provide written information about children which is then anonymized and entered on the Registry. Contributors are able to request information contained within the Registry for the purpose of epidemiological, molecular, diagnostic, or therapeutic research. Up to May 1998, 60 cases were entered on the Registry.
authors: Department of Paediatrics, UCLMS, The Rayne Institute, University Street, London, United Kingdom.
authors: R E
authors: RE
authors: Williams
authors: R M
authors: RM
authors: Gardiner
authors: H H
authors: HH
authors: Goebel
mesh_terms: D005060:Europe; D006801:Humans; D009472:Neuronal Ceroid-Lipofuscinoses; D012042:Registries