Chances and challenges of a long-term data repository in multiple sclerosis: 20th birthday of the German MS registry

Abstract In 2001, the German Multiple Sclerosis Society, facing lack of data, founded the German MS Registry (GMSR) as a long-term data repository for MS healthcare research. By the establishment of a network of participating neurological centres of different healthcare sectors across Germany, GMSR...

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Autores principales:	Lisa-Marie Ohle, David Ellenberger, Peter Flachenecker, Tim Friede, Judith Haas, Kerstin Hellwig, Tina Parciak, Clemens Warnke, Friedemann Paul, Uwe K. Zettl, Alexander Stahmann
Formato:	article
Lenguaje:	EN
Publicado:	Nature Portfolio 2021
Materias:	Medicine R Science Q
Acceso en línea:	https://doaj.org/article/3654845ac2f64275b780abb489f96ac1
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spelling	oai:doaj.org-article:3654845ac2f64275b780abb489f96ac12021-12-02T17:12:21ZChances and challenges of a long-term data repository in multiple sclerosis: 20th birthday of the German MS registry10.1038/s41598-021-92722-x2045-2322https://doaj.org/article/3654845ac2f64275b780abb489f96ac12021-06-01T00:00:00Zhttps://doi.org/10.1038/s41598-021-92722-xhttps://doaj.org/toc/2045-2322Abstract In 2001, the German Multiple Sclerosis Society, facing lack of data, founded the German MS Registry (GMSR) as a long-term data repository for MS healthcare research. By the establishment of a network of participating neurological centres of different healthcare sectors across Germany, GMSR provides observational real-world data on long-term disease progression, sociodemographic factors, treatment and the healthcare status of people with MS. This paper aims to illustrate the framework of the GMSR. Structure, design and data quality processes as well as collaborations of the GMSR are presented. The registry’s dataset, status and results are discussed. As of 08 January 2021, 187 centres from different healthcare sectors participate in the GMSR. Following its infrastructure and dataset specification upgrades in 2014, more than 196,000 visits have been recorded relating to more than 33,000 persons with MS (PwMS). The GMSR enables monitoring of PwMS in Germany, supports scientific research projects, and collaborates with national and international MS data repositories and initiatives. With its recent pharmacovigilance extension, it aligns with EMA recommendations and helps to ensure early detection of therapy-related safety signals.Lisa-Marie OhleDavid EllenbergerPeter FlacheneckerTim FriedeJudith HaasKerstin HellwigTina ParciakClemens WarnkeFriedemann PaulUwe K. ZettlAlexander StahmannNature PortfolioarticleMedicineRScienceQENScientific Reports, Vol 11, Iss 1, Pp 1-9 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Medicine R Science Q
spellingShingle	Medicine R Science Q Lisa-Marie Ohle David Ellenberger Peter Flachenecker Tim Friede Judith Haas Kerstin Hellwig Tina Parciak Clemens Warnke Friedemann Paul Uwe K. Zettl Alexander Stahmann Chances and challenges of a long-term data repository in multiple sclerosis: 20th birthday of the German MS registry
description	Abstract In 2001, the German Multiple Sclerosis Society, facing lack of data, founded the German MS Registry (GMSR) as a long-term data repository for MS healthcare research. By the establishment of a network of participating neurological centres of different healthcare sectors across Germany, GMSR provides observational real-world data on long-term disease progression, sociodemographic factors, treatment and the healthcare status of people with MS. This paper aims to illustrate the framework of the GMSR. Structure, design and data quality processes as well as collaborations of the GMSR are presented. The registry’s dataset, status and results are discussed. As of 08 January 2021, 187 centres from different healthcare sectors participate in the GMSR. Following its infrastructure and dataset specification upgrades in 2014, more than 196,000 visits have been recorded relating to more than 33,000 persons with MS (PwMS). The GMSR enables monitoring of PwMS in Germany, supports scientific research projects, and collaborates with national and international MS data repositories and initiatives. With its recent pharmacovigilance extension, it aligns with EMA recommendations and helps to ensure early detection of therapy-related safety signals.
format	article
author	Lisa-Marie Ohle David Ellenberger Peter Flachenecker Tim Friede Judith Haas Kerstin Hellwig Tina Parciak Clemens Warnke Friedemann Paul Uwe K. Zettl Alexander Stahmann
author_facet	Lisa-Marie Ohle David Ellenberger Peter Flachenecker Tim Friede Judith Haas Kerstin Hellwig Tina Parciak Clemens Warnke Friedemann Paul Uwe K. Zettl Alexander Stahmann
author_sort	Lisa-Marie Ohle
title	Chances and challenges of a long-term data repository in multiple sclerosis: 20th birthday of the German MS registry
title_short	Chances and challenges of a long-term data repository in multiple sclerosis: 20th birthday of the German MS registry
title_full	Chances and challenges of a long-term data repository in multiple sclerosis: 20th birthday of the German MS registry
title_fullStr	Chances and challenges of a long-term data repository in multiple sclerosis: 20th birthday of the German MS registry
title_full_unstemmed	Chances and challenges of a long-term data repository in multiple sclerosis: 20th birthday of the German MS registry
title_sort	chances and challenges of a long-term data repository in multiple sclerosis: 20th birthday of the german ms registry
publisher	Nature Portfolio
publishDate	2021
url	https://doaj.org/article/3654845ac2f64275b780abb489f96ac1
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Chances and challenges of a long-term data repository in multiple sclerosis: 20th birthday of the German MS registry

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