Sage Journals: Discover world-class research

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 Français de la Sclérose 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.

Keywords

Multiple sclerosis registry database epidemiology quality

Get full access to this article

View all access options for this article.

References

Confavreux

Compston

Hommes

, et al. EDMUS, a European database for multiple sclerosis. J Neurol Neurosurg Psychiatry 1992; 55: 671–676.

Cotton

Kremer

Hannoun

et al.; Imaging Working Group of the Observatoire Français de la Sclérose en Plaques. OFSEP, a nationwide cohort of people with multiple sclerosis: Consensus minimal MRI protocol. J Neuroradiol 2015; 42: 133–140.

Barbin

Rousseau

Jousset

et al.; On behalf of CFSEP and OFSEP Groups. Comparative efficacy of fingolimod vs natalizumab: A French multicenter observational study. Neurology 2016; 86: 771–778.

Laplaud

Barbin

Casey

et al.; On behalf of SFSEP and OFSEP Groups. Comparative efficacy of teriflunomide versus dimethyl-fumarate on clinical and MRI outcomes: A two years French multicenter observational study. Mult Scler J 2018; 24(S2): 8–120.

Papeix

Vukusic

Casey

et al.; For the TYSEDMUS and OFSEP Groups. Risk of relapse after natalizumab withdrawal: Results from the French TYSEDMUS cohort. Neurol Neuroimmunol Neuroinflamm 2016; 3: e297.

Vukusic

Rollot

Pique

et al.; On behalf of the OFSEP Investigators. Did risk stratification modify the incidence of PML in natalizumab-treated MS patients in France? Mult Scler J 2018; 24(S2): 981–1026.

Kalincik

Kuhle

Pucci

, et al; MSBase Scientific Leadership Group and MSBase Study Group. Data quality evaluation for observational multiple sclerosis registries. Mult Scler 2016; 23: 647–655.

Myhr

Grytten

Torkildsen

, et al. A need for national registries and international collaborative research in multiple sclerosis. Acta Neurol Scand Suppl 2012; 195: 1–3.

Ziemssen

Hillert

Butzkueven

The importance of collecting structured clinical information on multiple sclerosis. BMC Med 2016; 14: 81.

10.

Iaffaldano

Lucisano

Butzkueven

, et al; On behalf of the Big MS Data Network: A collaboration of the Danish MS Registry, Italian MS Registry, Swedish MS Registry, MSBase and the OFSEP. The optimal time to start treatment in relapsing remitting multiple sclerosis patients: Results from the Big Multiple Sclerosis Data Network. Mult Scler J 2018; 24(S2): 8–120.

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.51 MB

1.11 MB