A project built over several decades
The first steps towards OFSEP
In 1990, Professor Christian Confavreux († 2013) designed a software program called EDMUS (European Database for MUltiple Sclerosis) with European funding. This software enables clinical data from MS patients to be collected and compiled into a database. It is based on a common language that is recognized and accepted for describing the disease.
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.
2010: national call for projects, leading to the creation of OFSEP
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).