Universität zu Köln

Ohle, Lisa-Marie, Ellenberger, David, Flachenecker, Peter, Friede, Tim ORCID: 0000-0001-5347-7441, Haas, Judith, Hellwig, Kerstin, Parciak, Tina, Warnke, Clemens, Paul, Friedemann, Zettl, Uwe K. and Stahmann, Alexander (2021). Chances and challenges of a long-term data repository in multiple sclerosis: 20th birthday of the German MS registry. Sci Rep, 11 (1). BERLIN: NATURE PORTFOLIO. ISSN 2045-2322

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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.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Ohle, Lisa-Marie UNSPECIFIED UNSPECIFIED UNSPECIFIED Ellenberger, David UNSPECIFIED UNSPECIFIED UNSPECIFIED Flachenecker, Peter UNSPECIFIED UNSPECIFIED UNSPECIFIED Friede, Tim UNSPECIFIED orcid.org/0000-0001-5347-7441 UNSPECIFIED Haas, Judith UNSPECIFIED UNSPECIFIED UNSPECIFIED Hellwig, Kerstin UNSPECIFIED UNSPECIFIED UNSPECIFIED Parciak, Tina UNSPECIFIED UNSPECIFIED UNSPECIFIED Warnke, Clemens UNSPECIFIED UNSPECIFIED UNSPECIFIED Paul, Friedemann UNSPECIFIED UNSPECIFIED UNSPECIFIED Zettl, Uwe K. UNSPECIFIED UNSPECIFIED UNSPECIFIED Stahmann, Alexander UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-598994
DOI:	10.1038/s41598-021-92722-x
Journal or Publication Title:	Sci Rep
Volume:	11
Number:	1
Date:	2021
Publisher:	NATURE PORTFOLIO
Place of Publication:	BERLIN
ISSN:	2045-2322
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language TIME Multiple languages Multidisciplinary Sciences Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/59899