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Neuromyelitis Optica in Austria in 2011: To Bridge the Gap between Neuroepidemiological Research and Practice in a Study Population of 8.4 Million People

BACKGROUND: In 2008 the Austrian Task Force for Neuromyelitis Optica (NMO) started a nation-wide network for information exchange and multi-centre collaboration. Their aim was to detect all patients with NMO or NMO spectrum disorders (NMO-SD) in Austria and to analyse their disease courses and respo...

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Autores principales: Aboul-Enein, Fahmy, Seifert-Held, Thomas, Mader, Simone, Kuenz, Bettina, Lutterotti, Andreas, Rauschka, Helmut, Rommer, Paulus, Leutmezer, Fritz, Vass, Karl, Flamm-Horak, Agathe, Stepansky, Robert, Lang, Wilfried, Fertl, Elisabeth, Schlager, Thomas, Heller, Thomas, Eggers, Christian, Safoschnik, Georg, Fuchs, Siegrid, Kraus, Jörg, Assar, Hamid, Guggenberger, Stefan, Reisz, Martin, Schnabl, Peter, Komposch, Martina, Simschitz, Philipp, Skrobal, Alena, Moser, Alexander, Jeschow, Mario, Stadlbauer, Dorothea, Freimüller, Manfred, Guger, Michael, Schmidegg, Susanne, Franta, Claudia, Weiser, Vera, Koppi, Stefan, Niederkorn-Duft, Margret, Raber, Bettina, Schmeissner, Iris, Jecel, Julia, Tinchon, Alexander, Storch, Maria K., Reindl, Markus, Berger, Thomas, Kristoferitsch, Wolfgang
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2013
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3818238/
https://www.ncbi.nlm.nih.gov/pubmed/24223985
http://dx.doi.org/10.1371/journal.pone.0079649
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author Aboul-Enein, Fahmy
Seifert-Held, Thomas
Mader, Simone
Kuenz, Bettina
Lutterotti, Andreas
Rauschka, Helmut
Rommer, Paulus
Leutmezer, Fritz
Vass, Karl
Flamm-Horak, Agathe
Stepansky, Robert
Lang, Wilfried
Fertl, Elisabeth
Schlager, Thomas
Heller, Thomas
Eggers, Christian
Safoschnik, Georg
Fuchs, Siegrid
Kraus, Jörg
Assar, Hamid
Guggenberger, Stefan
Reisz, Martin
Schnabl, Peter
Komposch, Martina
Simschitz, Philipp
Skrobal, Alena
Moser, Alexander
Jeschow, Mario
Stadlbauer, Dorothea
Freimüller, Manfred
Guger, Michael
Schmidegg, Susanne
Franta, Claudia
Weiser, Vera
Koppi, Stefan
Niederkorn-Duft, Margret
Raber, Bettina
Schmeissner, Iris
Jecel, Julia
Tinchon, Alexander
Storch, Maria K.
Reindl, Markus
Berger, Thomas
Kristoferitsch, Wolfgang
author_facet Aboul-Enein, Fahmy
Seifert-Held, Thomas
Mader, Simone
Kuenz, Bettina
Lutterotti, Andreas
Rauschka, Helmut
Rommer, Paulus
Leutmezer, Fritz
Vass, Karl
Flamm-Horak, Agathe
Stepansky, Robert
Lang, Wilfried
Fertl, Elisabeth
Schlager, Thomas
Heller, Thomas
Eggers, Christian
Safoschnik, Georg
Fuchs, Siegrid
Kraus, Jörg
Assar, Hamid
Guggenberger, Stefan
Reisz, Martin
Schnabl, Peter
Komposch, Martina
Simschitz, Philipp
Skrobal, Alena
Moser, Alexander
Jeschow, Mario
Stadlbauer, Dorothea
Freimüller, Manfred
Guger, Michael
Schmidegg, Susanne
Franta, Claudia
Weiser, Vera
Koppi, Stefan
Niederkorn-Duft, Margret
Raber, Bettina
Schmeissner, Iris
Jecel, Julia
Tinchon, Alexander
Storch, Maria K.
Reindl, Markus
Berger, Thomas
Kristoferitsch, Wolfgang
author_sort Aboul-Enein, Fahmy
collection PubMed
description BACKGROUND: In 2008 the Austrian Task Force for Neuromyelitis Optica (NMO) started a nation-wide network for information exchange and multi-centre collaboration. Their aim was to detect all patients with NMO or NMO spectrum disorders (NMO-SD) in Austria and to analyse their disease courses and response to treatment. METHODS: (1) As of March 2008, 1957 serum samples (of 1557 patients) have been tested with an established cell based immunofluorescence aquaporin-4 antibody (AQP4-ab) assay with a high sensitivity and specificity (both >95%). All tests were performed in a single reference laboratory (Clinical Dept. of Neurology of the Innsbruck Medical University). (2) A nation-wide survey with several calls for participation (via email newsletters, articles in the official journal of the Austrian Society of Neurology, and workshops) was initiated in 2008. All collected data will be presented in a way that allows that every individual patient can be traced back in order to ensure transparency and to avoid any data distortion in future meta-analyses. The careful and detailed presentation allows the visualization and comparison of the different disease courses in real time span. Failure and response to treatment are made visible at one glance. Database closure was 31 December 2011. All co-operators were offered co-authorship. RESULTS: All 71 NMO- or NMO-SD patients with AQP4-ab positivity (age range 12.3 to 79.6 years) were analysed in detail. Sex ratio (m:f = 1:7) and the proportion of patients without oligoclonal bands in cerebrospinal fluid (86.6%) were in line with previously published results. All identified patients were Caucasians. CONCLUSIONS: A nationwide collaboration amongst Austrian neurologists with good network communications made it possible to establish a database of 71 AQP4-ab positive patients with NMO/NMO-SD. This database is presented in detail and provides the basis for further studies and international cooperation in order to investigate this rare disease.
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spelling pubmed-38182382013-11-09 Neuromyelitis Optica in Austria in 2011: To Bridge the Gap between Neuroepidemiological Research and Practice in a Study Population of 8.4 Million People Aboul-Enein, Fahmy Seifert-Held, Thomas Mader, Simone Kuenz, Bettina Lutterotti, Andreas Rauschka, Helmut Rommer, Paulus Leutmezer, Fritz Vass, Karl Flamm-Horak, Agathe Stepansky, Robert Lang, Wilfried Fertl, Elisabeth Schlager, Thomas Heller, Thomas Eggers, Christian Safoschnik, Georg Fuchs, Siegrid Kraus, Jörg Assar, Hamid Guggenberger, Stefan Reisz, Martin Schnabl, Peter Komposch, Martina Simschitz, Philipp Skrobal, Alena Moser, Alexander Jeschow, Mario Stadlbauer, Dorothea Freimüller, Manfred Guger, Michael Schmidegg, Susanne Franta, Claudia Weiser, Vera Koppi, Stefan Niederkorn-Duft, Margret Raber, Bettina Schmeissner, Iris Jecel, Julia Tinchon, Alexander Storch, Maria K. Reindl, Markus Berger, Thomas Kristoferitsch, Wolfgang PLoS One Research Article BACKGROUND: In 2008 the Austrian Task Force for Neuromyelitis Optica (NMO) started a nation-wide network for information exchange and multi-centre collaboration. Their aim was to detect all patients with NMO or NMO spectrum disorders (NMO-SD) in Austria and to analyse their disease courses and response to treatment. METHODS: (1) As of March 2008, 1957 serum samples (of 1557 patients) have been tested with an established cell based immunofluorescence aquaporin-4 antibody (AQP4-ab) assay with a high sensitivity and specificity (both >95%). All tests were performed in a single reference laboratory (Clinical Dept. of Neurology of the Innsbruck Medical University). (2) A nation-wide survey with several calls for participation (via email newsletters, articles in the official journal of the Austrian Society of Neurology, and workshops) was initiated in 2008. All collected data will be presented in a way that allows that every individual patient can be traced back in order to ensure transparency and to avoid any data distortion in future meta-analyses. The careful and detailed presentation allows the visualization and comparison of the different disease courses in real time span. Failure and response to treatment are made visible at one glance. Database closure was 31 December 2011. All co-operators were offered co-authorship. RESULTS: All 71 NMO- or NMO-SD patients with AQP4-ab positivity (age range 12.3 to 79.6 years) were analysed in detail. Sex ratio (m:f = 1:7) and the proportion of patients without oligoclonal bands in cerebrospinal fluid (86.6%) were in line with previously published results. All identified patients were Caucasians. CONCLUSIONS: A nationwide collaboration amongst Austrian neurologists with good network communications made it possible to establish a database of 71 AQP4-ab positive patients with NMO/NMO-SD. This database is presented in detail and provides the basis for further studies and international cooperation in order to investigate this rare disease. Public Library of Science 2013-11-05 /pmc/articles/PMC3818238/ /pubmed/24223985 http://dx.doi.org/10.1371/journal.pone.0079649 Text en © 2013 Aboul-Enein et al http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are properly credited.
spellingShingle Research Article
Aboul-Enein, Fahmy
Seifert-Held, Thomas
Mader, Simone
Kuenz, Bettina
Lutterotti, Andreas
Rauschka, Helmut
Rommer, Paulus
Leutmezer, Fritz
Vass, Karl
Flamm-Horak, Agathe
Stepansky, Robert
Lang, Wilfried
Fertl, Elisabeth
Schlager, Thomas
Heller, Thomas
Eggers, Christian
Safoschnik, Georg
Fuchs, Siegrid
Kraus, Jörg
Assar, Hamid
Guggenberger, Stefan
Reisz, Martin
Schnabl, Peter
Komposch, Martina
Simschitz, Philipp
Skrobal, Alena
Moser, Alexander
Jeschow, Mario
Stadlbauer, Dorothea
Freimüller, Manfred
Guger, Michael
Schmidegg, Susanne
Franta, Claudia
Weiser, Vera
Koppi, Stefan
Niederkorn-Duft, Margret
Raber, Bettina
Schmeissner, Iris
Jecel, Julia
Tinchon, Alexander
Storch, Maria K.
Reindl, Markus
Berger, Thomas
Kristoferitsch, Wolfgang
Neuromyelitis Optica in Austria in 2011: To Bridge the Gap between Neuroepidemiological Research and Practice in a Study Population of 8.4 Million People
title Neuromyelitis Optica in Austria in 2011: To Bridge the Gap between Neuroepidemiological Research and Practice in a Study Population of 8.4 Million People
title_full Neuromyelitis Optica in Austria in 2011: To Bridge the Gap between Neuroepidemiological Research and Practice in a Study Population of 8.4 Million People
title_fullStr Neuromyelitis Optica in Austria in 2011: To Bridge the Gap between Neuroepidemiological Research and Practice in a Study Population of 8.4 Million People
title_full_unstemmed Neuromyelitis Optica in Austria in 2011: To Bridge the Gap between Neuroepidemiological Research and Practice in a Study Population of 8.4 Million People
title_short Neuromyelitis Optica in Austria in 2011: To Bridge the Gap between Neuroepidemiological Research and Practice in a Study Population of 8.4 Million People
title_sort neuromyelitis optica in austria in 2011: to bridge the gap between neuroepidemiological research and practice in a study population of 8.4 million people
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3818238/
https://www.ncbi.nlm.nih.gov/pubmed/24223985
http://dx.doi.org/10.1371/journal.pone.0079649
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