An international registry for neurodegeneration with brain iron accumulation

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 sci...

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Autores principales: Kalman, Bernadette, Lautenschlaeger, Ronald, Kohlmayer, Florian, Büchner, Boriana, Kmiec, Thomas, Klopstock, Thomas, Kuhn, Klaus A
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2012
Materias:
Letter to the Editor
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3520814/
https://www.ncbi.nlm.nih.gov/pubmed/22985983
http://dx.doi.org/10.1186/1750-1172-7-66
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author Kalman, Bernadette
Lautenschlaeger, Ronald
Kohlmayer, Florian
Büchner, Boriana
Kmiec, Thomas
Klopstock, Thomas
Kuhn, Klaus A
author_facet Kalman, Bernadette
Lautenschlaeger, Ronald
Kohlmayer, Florian
Büchner, Boriana
Kmiec, Thomas
Klopstock, Thomas
Kuhn, Klaus A
author_sort Kalman, Bernadette
collection PubMed
description 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.
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spelling pubmed-35208142012-12-13 An international registry for neurodegeneration with brain iron accumulation Kalman, Bernadette Lautenschlaeger, Ronald Kohlmayer, Florian Büchner, Boriana Kmiec, Thomas Klopstock, Thomas Kuhn, Klaus A Orphanet J Rare Dis Letter to the Editor 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. BioMed Central 2012-09-17 /pmc/articles/PMC3520814/ /pubmed/22985983 http://dx.doi.org/10.1186/1750-1172-7-66 Text en Copyright ©2012 Kalman et al.; licensee BioMed Central Ltd. http://creativecommons.org/licenses/by/2.0 This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Letter to the Editor
Kalman, Bernadette
Lautenschlaeger, Ronald
Kohlmayer, Florian
Büchner, Boriana
Kmiec, Thomas
Klopstock, Thomas
Kuhn, Klaus A
An international registry for neurodegeneration with brain iron accumulation
title An international registry for neurodegeneration with brain iron accumulation
title_full An international registry for neurodegeneration with brain iron accumulation
title_fullStr An international registry for neurodegeneration with brain iron accumulation
title_full_unstemmed An international registry for neurodegeneration with brain iron accumulation
title_short An international registry for neurodegeneration with brain iron accumulation
title_sort international registry for neurodegeneration with brain iron accumulation
topic Letter to the Editor
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3520814/
https://www.ncbi.nlm.nih.gov/pubmed/22985983
http://dx.doi.org/10.1186/1750-1172-7-66
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