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

Multiple Sclerosis Journal - Tập 26 Số 1 - Trang 118-122 - 2020
Sandra Vukusic1, Romain Casey1, Fabien Rollot1, Bruno Brochet2, Jean Pelletier3, Pierre Labauge4, H. Devilliers5, François Cotton6, Thibault Moreau7, Bruno Stankoff8, Bertrand Fontaine9, Francis Guillemin10, Marc Debouverie11, Michel Clanet12
1Service 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
2Service de Neurologie, CHU de Bordeaux, Bordeaux, France/Université de Bordeaux, Bordeaux, France/INSERM U 1215, Neurocentre Magendie, Bordeaux, France
3Service de Neurologie, Pôle de Neurosciences Cliniques, Hôpital de la Timone, APHM and CNRS, CRMBM UMR 7339, Aix-Marseille Université, Marseille, France
4Service de Neurologie, Centre Hospitalier Universitaire de Nantes and CIC015 INSERM, Nantes, France/INSERM CR1064, Nantes, France
5Department of Neurology and Clinical Investigation Center, CHU de Strasbourg, INSERM 1434, Strasbourg, France
6Department 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
7Department of Neurology, CHU de Dijon, EA7270, University Bourgogne Franche-Comté, Dijon, France
8CHU Saint-Antoine [AP-HP] (184, rue du Faubourg Saint-Antoine 75571 Paris cedex 12 - France)
9INSERM 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
10EA 4360 APEMAC, Université de Lorraine, Nancy, France/INSERM CIC 1433 Clinical Epidemiology, Nancy University Hospital, Nancy, France
11EA 4360 APEMAC, Université de Lorraine, Nancy, France/Department of Neurology, Nancy University Hospital, Nancy, France
12Department of Neurology, CHU de Toulouse, Toulouse, France

Tóm tắt

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.

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Tài liệu tham khảo

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Multiple Sclerosis Journal

Tập 26 Số 1

118-122

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