Advancing research, usefully and concretely
The Eugène Devic EDMUS Foundation at the service of research against multiple sclerosis
The Eugène Devic EDMUS Foundation against multiple sclerosis and related diseases was created at the Hospices civils de Lyon. Its name is a tribute to Professor Eugène Devic who described, in Lyon, for the first time, acute myelitis neuro-optico, a particular form of multiple sclerosis.
Professor Christian Confavreux, founder and first President of the EDMUS Foundation, has devoted his entire professional career to the fight against this disease. Head of the Neurology Department at the Lyon University Hospital specialising in MS, he has done a great deal of work to better understand the origins and causes of MS (his medical thesis was published in the prestigious journal Brain in 1980).
A renowned neurologist, he was at the origin 30 years ago of the development of the EDMUS database, which today allows many teams in France and around the world to follow people living with MS, thanks to the use of a common language and standardized means of measuring evolution.
In France, since 2003, neurologists specialising in MS using EDMUS software have been setting up a network to exchange patient follow-up data: a cohort of more than 30,000 patients has been formed. The analysis of these patients' data leads to the publication of several articles that have improved knowledge of the disease and patient management.
He is also at the origin of the creation of the OFSEP, a large national cohort supported by future investments. An observatory that brings together all the French reference centres on MS.
Visionary, humanist and supported by a solid network of researchers and neurologists, he has worked for 30 years for the success of the EDMUS Foundation.
His outstanding role in the field has earned him recognition from his peers, both in France and abroad, and he was appointed President of ECTRIMS, a European organisation for MS research and treatment. He died on 20 September 2013, at the age of 64.
The Foundation is currently chaired by Professor Sandra Vukusic, Professor of University Hospital Practitioners, Head of the SEP Department at the Pierre Wertheimer Neurological Hospital in Bron and OFSEP's Scientific Coordinator.
For 15 years, the project has had a European dimension. From now on, cooperation is global. 291 centres in 42 countries use EDMUS software.