☆ 4.3 Article

Observatoire Francais de la Sclerose en Plaques (OFSEP): A unique multimodal nationwide MS registry in France

MULTIPLE SCLEROSIS JOURNAL (2020)

Journal

MULTIPLE SCLEROSIS JOURNAL

Volume 26, Issue 1, Pages 118-122

Publisher

SAGE PUBLICATIONS LTD

DOI: 10.1177/1352458518815602

Keywords

Multiple sclerosis; registry; database; epidemiology; quality

Categories

Clinical Neurology Neurosciences

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Abstract

The care of multiple sclerosis (MS) in France is based on two complementary interlinked networks: MS expert centers in university hospitals and regional networks of neurologists. The routine use of European database for multiple sclerosis (EDMUS) in all those centers has paved the way for the constitution of a national registry, designated as Observatoire Francais de la Sclerose En Plaques (OFSEP). It promotes a prospective, standardized, high-quality, and multimodal collection of data. On June 2018, there were 68.097 files, with 71.1% females, representing 761,185 person-years. This huge database is open to the scientific community and might contribute exploring unresolved issues and unmet needs in MS.

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