Contributions
Abstract: P335
Type: Poster
Abstract Category: Clinical aspects of MS - 5 Epidemiology
Context: The Observatoire Français de la Sclérose En Plaques (OFSEP) is a French national cohort of patients with multiple sclerosis (MS), granted in 2011 for a ten-year tenure by the French National Research Agency. The OFSEP project aims at collecting data in a routine clinical setting, to foster clinical, basic and translational research in MS.
Methods: Persons with MS and related disorders are followed longitudinally by their neurologist involved in the OFSEP network, who collects clinical data in a computerized medical file, EDMUS. Since June 2013, this collection is standardized, including demographic and socioeconomic characteristics and disease and therapeutic description. Since April 2016, serious adverse events are also systematically collected. A standardized imaging protocol has been developed and is currently disseminated in MRI centers; raw data are stored in a centralized national facility, Shanoir. Biological samples are collected in 6 specific subgroups. OFSEP has implemented a strategy to improve the quality of its data and samples, and to improve representativity of patients. Based on published incidence and prevalence data of MS in France, the regional coverage of MS patients was established over time.
Results: On 15 December 2016, clinical data from 40 centres, representing all French MS referral centres and networks, were aggregated: data from 56,401 patients were available. Standardized MRIs were produced by 15 MRIs centres and 3005 sequences from 264 patients were available. Biological samples were collected in 12 centres from 548 patients. OFSEP covered 37% of MS patients in 2012 (from 0% to 100% by region, median=26%); in 2016, OFSEP coverage increase to 45% (from 3% to 100% by region, median=52%).
Discussion: Over the last 5 years, OFSEP has extended its diversity, quality and representativity. Its data are open to physicians and researchers, public and private entities, in France and abroad.
Disclosure: Dr. Casey has no financial disclosure to declare.
Mr. Rollot has no financial disclosure to declare.
Dr. Clanet has no financial disclosure to declare.
Dr. Brochet has received consulting and lecturing fees, travel grants and unconditional research support from Actelion, Biogen, Genzyme, Medday, Novartis, Merck Serono, Roche, Sanofi Aventis and Teva Pharma.
Dr. Pelletier has received consulting and lecturing fees, travel grants and unconditional research support from Biogen, Genzyme, Novartis, Merck Serono, Roche, Sanofi Aventis and Teva Pharma.
Dr. Laplaud has received consulting and lecturing fees, travel grants and unconditional research support from Biogen, Genzyme, Novartis, Merck Serono, Roche, Sanofi Aventis and Teva Pharma.
Dr. De Sèze has no financial disclosure related to this project to declare.
Dr. Cotton has received consulting and lecturing fees, travel grants and unconditional research support from Biogen, Novartis, Bracco imaging, Bayer Schering and Guerbet.
Dr. Moreau has no financial disclosure related to this project to declare.
Dr. Stankoff has no financial disclosure related to this project to declare.
Dr. Fontaine has received a research grant from Biogen and is supported by funding from the Investment for the Future program ANR-10-IAIHU-06 and ANR-10-INBS-01-D1.
Dr. Debouverie has received consulting and lecturing fees, travel grants and unconditional research support from Biogen, Genzyme, Novartis, Merck Serono, Roche, Sanofi Aventis and Teva Pharma.
Dr. Confavreux has no financial disclosure to declare.
Dr. Vukusic has received consulting and lecturing fees, travel grants and unconditional research support from Biogen, Geneuro, Genzyme, Novartis, Merck Serono, Roche, Sanofi Aventis and Teva Pharma.
Abstract: P335
Type: Poster
Abstract Category: Clinical aspects of MS - 5 Epidemiology
Context: The Observatoire Français de la Sclérose En Plaques (OFSEP) is a French national cohort of patients with multiple sclerosis (MS), granted in 2011 for a ten-year tenure by the French National Research Agency. The OFSEP project aims at collecting data in a routine clinical setting, to foster clinical, basic and translational research in MS.
Methods: Persons with MS and related disorders are followed longitudinally by their neurologist involved in the OFSEP network, who collects clinical data in a computerized medical file, EDMUS. Since June 2013, this collection is standardized, including demographic and socioeconomic characteristics and disease and therapeutic description. Since April 2016, serious adverse events are also systematically collected. A standardized imaging protocol has been developed and is currently disseminated in MRI centers; raw data are stored in a centralized national facility, Shanoir. Biological samples are collected in 6 specific subgroups. OFSEP has implemented a strategy to improve the quality of its data and samples, and to improve representativity of patients. Based on published incidence and prevalence data of MS in France, the regional coverage of MS patients was established over time.
Results: On 15 December 2016, clinical data from 40 centres, representing all French MS referral centres and networks, were aggregated: data from 56,401 patients were available. Standardized MRIs were produced by 15 MRIs centres and 3005 sequences from 264 patients were available. Biological samples were collected in 12 centres from 548 patients. OFSEP covered 37% of MS patients in 2012 (from 0% to 100% by region, median=26%); in 2016, OFSEP coverage increase to 45% (from 3% to 100% by region, median=52%).
Discussion: Over the last 5 years, OFSEP has extended its diversity, quality and representativity. Its data are open to physicians and researchers, public and private entities, in France and abroad.
Disclosure: Dr. Casey has no financial disclosure to declare.
Mr. Rollot has no financial disclosure to declare.
Dr. Clanet has no financial disclosure to declare.
Dr. Brochet has received consulting and lecturing fees, travel grants and unconditional research support from Actelion, Biogen, Genzyme, Medday, Novartis, Merck Serono, Roche, Sanofi Aventis and Teva Pharma.
Dr. Pelletier has received consulting and lecturing fees, travel grants and unconditional research support from Biogen, Genzyme, Novartis, Merck Serono, Roche, Sanofi Aventis and Teva Pharma.
Dr. Laplaud has received consulting and lecturing fees, travel grants and unconditional research support from Biogen, Genzyme, Novartis, Merck Serono, Roche, Sanofi Aventis and Teva Pharma.
Dr. De Sèze has no financial disclosure related to this project to declare.
Dr. Cotton has received consulting and lecturing fees, travel grants and unconditional research support from Biogen, Novartis, Bracco imaging, Bayer Schering and Guerbet.
Dr. Moreau has no financial disclosure related to this project to declare.
Dr. Stankoff has no financial disclosure related to this project to declare.
Dr. Fontaine has received a research grant from Biogen and is supported by funding from the Investment for the Future program ANR-10-IAIHU-06 and ANR-10-INBS-01-D1.
Dr. Debouverie has received consulting and lecturing fees, travel grants and unconditional research support from Biogen, Genzyme, Novartis, Merck Serono, Roche, Sanofi Aventis and Teva Pharma.
Dr. Confavreux has no financial disclosure to declare.
Dr. Vukusic has received consulting and lecturing fees, travel grants and unconditional research support from Biogen, Geneuro, Genzyme, Novartis, Merck Serono, Roche, Sanofi Aventis and Teva Pharma.