OFSEP is an observational cohort of Multiple Sclerosis (MS) and related disorders set up in
France. It aims to provide a major epidemiological tool on MS for the scientific community in
France and abroad. This tool must help to answer a large number of questions concerning the
causes and mechanisms of MS, the prognostic factors of disease progression, the effectiveness
and safety of therapeutic drugs, the impact of the disease on patients and society, etc.
In December 2015, it has already included more than 54.000 patients. To achieve this goal,
OFSEP's objectives are
- To maintain and develop the French cohort of patients suffering from MS or related
diseases and syndromes. This means collecting standardized socio-demographic and
clinical data as part of the routine medical follow-up of patients already in the cohort
and recruitment of new patients.
- To supplement the existing clinical data with standardized and quality biological
samples and MRI scans.
- To improve the previous data with medical/administrative data from the health insurance
fund databases in particular, in order to get more information on comorbidity, treatment
protocols and the medico-economic aspects of this disease.
- To use OFSEP infrastructures to facilitate the implementation of specific studies
requiring the collection of additional data or specific patient monitoring processes.
- To ensure the availability of these data and samples to researchers, health care
authorities and industrial players to enable analysis and thus provide answers to
research questions or public health issues. This availability is only possible after
scientific and regulatory evaluation of the request.
- To provide regular descriptions of the patient population in the cohort to offer
statistics, targets and up-to-date information on this disease and thus enable a better
approach to the personal, professional and social impacts of the illness, the effects of
basic treatments and the requirements related to the follow-up of this disease in
- To conduct specific studies on the entire population of patients in the cohort (parent
cohort) or on patient sub-groups with specific characteristics (nested cohorts). Four
nested cohorts have been defined: patients with radiologically isolated syndromes,
patients with clinically isolated syndromes, patients with primary progressive courses
of the disease and patients with neuromyelitis optica (Devic's syndrome) spectrum