French registry on Multiple Sclerosis FRESH-PEF3138-en Anne-Cécile DE GIACOMONI French registry on Multiple Sclerosis OFSEP FRESH-PEF3138-en 3138 FRESH-PEF3138 Sandra VUKUSIC HOSPICES CIVILS DE LYON (HCL) UNIVERSITE CLAUDE BERNARD LYON 1 Epidemiology France Portal (PEF) AGENCE NATIONALE DE LA RECHERCHE (ANR) null Romain;CASEY Pharmacoepidemiology Neurology Multiple sclerosis - Maintain and develop the national cohort of MS patients (currently more than 40,000 patients) registered at the EDMUS format (database that can be used as an electronic medical record, specifically designed to process the data of MS patients) and enrich the clinical data currently available with biological samples, MRI data and socio-economic data. - Provide a continuously updated "photograph" of MS in France, thus allowing a better understanding of the personal, professional and social consequences of the disease, and of the effect of disease modifying treatments (DMTs) in MS care in France. It is ideally suited for nationwide epidemiological studies on MS. - Maintain and develop existing nested cohorts ("historical" Lyon cohort on the natural history of MS, KIDMUS cohort on MS with childhood onset, TYSEDMUS cohort on patients treated with Tysabri, etc.) and implement new ones, addressing specific issues such as pharmaco-epidemiology of recently introduced DMTs and their cost effectiveness. To develop the new OFSEP-HD cohort null France Individuals Patients population Male Female Infant (28 days to 2 years) Child, Preschool (2 to 5 years) Child (6 to 12 years) Young Adult (19 to 24 years) Adult (25 to 44 years) Middle Aged (45 to 64 years) Aged (65 to 79 years) Aged, 80 and over (80 years and more) MS patients treated by any neurologist involved in the OFSEP project Clinical data Participant-reported health data Biological data Socio-demographic data Paraclinical data (non-biological) : Imaging Health event/morbidity Health event/mortality Health care consumption and services Quality of life/health perception Others Other Through independent healthcare practitioners Through organizations (health services or institutions schools businesses etc.) >= 20000 individuals Converting or copying information into a structured record Observational Study Observational Study Cohort study 62 000 Unknown Restricted access L'accès aux données et échantillons biologiques de la cohorte OFSEP est ouvert aux entités extérieures (académiques ou industrielles, publiques ou privées, françaises ou étrangères). Les demandes d'accès aux données doivent être adressées au Centre de coordination national de l'OFSEP (fichier disponible sur le site de l'OFSEP http://www.ofsep.org/fr/acces-aux-donnees ou sur demande à l'adresse contact@ofsep.org). Les projets seront évalués par le Comité scientifique de l'OFSEP et par le Centre de coordination national sur leur rationnel scientifique, la qualité du protocole et la faisabilité. Le respect des règles de bonnes pratiques, les aspects éthiques et la conformation à la réglementation en vigueur pour l'utilisation des données seront également considérés. Le Comité de Pilotage de l'OFSEP validera les décisions. La cession des données engendrera la signature d'une convention de mise à disposition entre l'OFSEP et l'entité extérieure. Access on specific project only