The OFSEP (Observatoire Français de la Sclérose en Plaques)


In France, in 2003, neurologists specialized in MS using the EDMUS software set up a network to exchange their patient follow-up data: a cohort of more than 30,000 patients was thus created. Analysis of the data of these patients led to the publication of a number of articles, improving knowledge of the illness and patient treatment.

In 2010, France's "Investments for the Future" program launched a call for projects, called “Cohorts 2010”.

In response to this call for projects, EDMUS foundation (owner of the EDMUS software) joined forces with Claude Bernard Lyon 1 university (UCBL1) and Lyon University Hospital to present the OFSEP (Observatoire Français de la Sclérose en Plaques) project.

In January 2011, OFSEP was selected and received financial support from the ANR (France's national research agency): almost €10 million over 10 years. The project, initially coordinated by Professor Christian Confavreux, has been coordinated since 2013 by Professor Sandra Vukusic (Neurology A department, Pierre Wertheimer neurological hospital - LYON).


OFSEP's objective is to be a major epidemiological tool on MS for the French and international scientific community. This tool should help to answer many questions : 

  • the causes and mechanisms of MS,
  • the prognostic factors of the disease evolution,
  • the effectiveness and safety of medicines,
  • the impact of the disease on patients and society, etc.




Using EDMUS software, it gathers clinical, biological and imaging data from approximately 70,000 people, making it a major epidemiological tool. 

it provides a "picture" of Multiple Sclerosis and its skills. 



It is supported by a network of French neurologists working in 61 EDMUS user centres in France.




the missions: 


  • Maintain and develop the national cohort of patients with MS or related diseases and syndromes. This involves collecting standardized socio-demographic and clinical data during the follow-up of patients already included in the cohort and including new patients.
  • Enrich previous data with medico-administrative data, particularly from the Health Insurance databases, in order to better understand the co-morbidities, care paths and medico-economic aspects associated with this disease.
  • Use OFSEP's infrastructure to facilitate the implementation of specific studies requiring additional data collection or specific patient follow-up.
  • Make these data and samples available to researchers, health authorities and industrialists to enable them to analyse them and thus answer research or public health questions. This can only be done after the scientific and regulatory assessment of the request (more information on how to access the data).



  • Describe on a regular basis the population of patients included in the cohort in order to provide quantified, objective and updated information on this disease and thus better understand the personal, professional and social impact of the disease, the effects of disease-specific treatments and the needs for disease management in France.
  • Conduct specific research on the entire population of patients included in the cohort (known as the mother cohort) or on subgroups of patients with specific characteristics (known as nested cohorts). In particular, four priority nest cohorts were identified: patients with radiologically isolated syndromes, patients with clinically isolated syndromes, patients with early progressive forms and patients with Devic's optical neuromyelitis.



OFSEP is supported by the National Research Agency (ANR), as part of a "Future Investment" programme.


retrouver toutes les informations et les missions menées par l’OFSEP sur le site :