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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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Item Type:Article
Title:Chances and challenges of a long-term data repository in multiple sclerosis: 20th birthday of the German MS registry
Creators Name:Ohle, L.M. and Ellenberger, D. and Flachenecker, P. and Friede, T. and Haas, J. and Hellwig, K. and Parciak, T. and Warnke, C. and Paul, F. and Zettl, U.K. and Stahmann, A.
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.
Keywords:Germany, Multiple Sclerosis, Probability, Registries
Source:Scientific Reports
Publisher:Nature Publishing Group
Page Range:13340
Date:25 June 2021
Official Publication:https://doi.org/10.1038/s41598-021-92722-x
PubMed:View item in PubMed

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