Logo
EnglishCookie löschen - von nun an wird die Spracheinstellung Ihres Browsers verwendet.
Kalman, Bernadette; Lautenschlaeger, Ronald; Kohlmayer, Florian; Buechner, Boriana; Kmiec, Thomas; Klopstock, Thomas; Kuhn, Klaus A.: An international registry for neurodegeneration with brain iron accumulation. In: Orphanet Journal of Rare Diseases 2012, 7:66
[img]
Vorschau

PDF

154kB

Abstract

We report the development of an international registry for Neurodegeneration with Brain Iron Accumulation (NBIA), in the context of TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration), an EU-FP7-funded project. This registry aims to combine scattered resources, integrate clinical and scientific knowledge, and generate a rich source for future research studies. This paper describes the content, architecture and future utility of the registry with the intent to capture as many NBIA patients as possible and to offer comprehensive information to the international scientific community.