Observatoire Français de la Sclérose en Plaques (OFSEP): A unique multimodal nationwide MS registry in France.


Journal

Multiple sclerosis (Houndmills, Basingstoke, England)
ISSN: 1477-0970
Titre abrégé: Mult Scler
Pays: England
ID NLM: 9509185

Informations de publication

Date de publication:
01 2020
Historique:
pubmed: 14 12 2018
medline: 18 11 2020
entrez: 14 12 2018
Statut: ppublish

Résumé

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.

Identifiants

pubmed: 30541380
doi: 10.1177/1352458518815602
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

118-122

Auteurs

Sandra Vukusic (S)

Service de neurologie-sclérose en plaques, pathologies de la myéline et neuro-inflammation, Hôpital Pierre Wertheimer, Hospices Civils de Lyon, Bron, France/Observatoire Français de la Sclérose en Plaques, Centre de Recherche en Neurosciences de Lyon, INSERM 1028 et CNRS UMR 5292, F-69003 Lyon, France/Université Claude Bernard Lyon 1, Université de Lyon, Lyon, France/ Eugène Devic EDMUS Foundation against Multiple Sclerosis, Bron, France.

Romain Casey (R)

Service de neurologie-sclérose en plaques, pathologies de la myéline et neuro-inflammation, Hôpital Pierre Wertheimer, Hospices Civils de Lyon, Bron, France/Observatoire Français de la Sclérose en Plaques, Centre de Recherche en Neurosciences de Lyon, INSERM 1028 et CNRS UMR 5292, F-69003 Lyon, France/Université Claude Bernard Lyon 1, Université de Lyon, Lyon, France/ Eugène Devic EDMUS Foundation against Multiple Sclerosis, Bron, France.

Fabien Rollot (F)

Service de neurologie-sclérose en plaques, pathologies de la myéline et neuro-inflammation, Hôpital Pierre Wertheimer, Hospices Civils de Lyon, Bron, France/Observatoire Français de la Sclérose en Plaques, Centre de Recherche en Neurosciences de Lyon, INSERM 1028 et CNRS UMR 5292, F-69003 Lyon, France/Université Claude Bernard Lyon 1, Université de Lyon, Lyon, France/ Eugène Devic EDMUS Foundation against Multiple Sclerosis, Bron, France.

Bruno Brochet (B)

Service de Neurologie, CHU de Bordeaux, Bordeaux, France/Université de Bordeaux, Bordeaux, France/INSERM U 1215, Neurocentre Magendie, Bordeaux, France.

Jean Pelletier (J)

Service de Neurologie, Pôle de Neurosciences Cliniques, Hôpital de la Timone, APHM and CNRS, CRMBM UMR 7339, Aix-Marseille Université, Marseille, France.

David-Axel Laplaud (DA)

Service de Neurologie, Centre Hospitalier Universitaire de Nantes and CIC015 INSERM, Nantes, France/INSERM CR1064, Nantes, France.

Jérôme De Sèze (J)

Department of Neurology and Clinical Investigation Center, CHU de Strasbourg, INSERM 1434, Strasbourg, France.

François Cotton (F)

Department of Radiology, Centre Hospitalier Lyon-Sud, Hospices Civils de Lyon, Pierre-Bénite, France/ CREATIS, CNRS UMR 5220, INSERM U1044, Villeurbanne, France/ Université Lyon 1, Lyon, France.

Thibault Moreau (T)

Department of Neurology, CHU de Dijon, EA7270, University Bourgogne Franche-Comté, Dijon, France.

Bruno Stankoff (B)

Neurology Department, Hôpital Saint-Antoine, APHP, Paris, France.

Bertrand Fontaine (B)

INSERM UMR S 1127, CNRS UMR 7225, Institut du Cerveau et de la Moelle épinière (ICM), Hôpital de la Pitié Salpêtrière, Sorbonne Universités, UPMC Paris 06, Paris, France.

Francis Guillemin (F)

EA 4360 APEMAC, Université de Lorraine, Nancy, France/INSERM CIC 1433 Clinical Epidemiology, Nancy University Hospital, Nancy, France.

Marc Debouverie (M)

EA 4360 APEMAC, Université de Lorraine, Nancy, France/Department of Neurology, Nancy University Hospital, Nancy, France.

Michel Clanet (M)

Department of Neurology, CHU de Toulouse, Toulouse, France.

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Classifications MeSH