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 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 specifi

SUBMITTER: Ohle LM 

PROVIDER: S-EPMC8233364 | biostudies-literature | 2021 Jun

REPOSITORIES: biostudies-literature