The EDMUS project
The EDMUS project (European Database for Multiple Sclerosis) was born in the Hospices Civils de Lyon in 1976 and has taken on a European dimension in 1990. Its finality is to facilitate the fight against Multiple Sclerosis (MS) and related diseases through the use of a common, standardized language elaborated through the continuous concertation of national and international experts. Thus, it aims at improving the care and treatment of patients with MS, and promoting research into this disease. For nearly 20 years now, this non-profit project has been upholding the EDMUS spirit of independence and objectivity.
Thus, the aims of the EDMUS project are fourfold:
- To develop and diffuse a software allowing the capture of data about patients affected with MS
- To promote the use of such a software in order to improve treatments and care of the patients with MS in the clinics of neurology
- To make use of the software's standardised common language to perform clinical and scientific studies on MS, in order to enlarge our knowledge of the disease and the treatment possibilities: these activities may either be monocenter- or multicenter-oriented and carried out at the local, national or international level
- To create a network, or networks of the centers which use the EDMUS system, through sharing of the essential data on their patients with MS
After a period dominated by the development of the EDMUS software and the demonstration of its potential, the project is now shifting mainly to the medical, scientific and educational activities made possible through the use of a common, recognized language for the description of the disease.
Multiple Sclerosis is the most common cause of neurological disability in the young. It is estimated that around 1 person in 1000 has MS in France, i.e. some 60 000 to 70 000 people, with 2000 to 3000 new cases each year. The disease occurs in about twice as many women as men.
MS begins on the average by age 30, i.e. at a crucial moment in the personal, familial, professional and social life. It has little effect on life expectancy. What makes it particularly daunting is its chronicity and duratioon. Indeed it eventually leads to a permanent inability to walk, to the requirement for a cane, then for a wheelchair after an average of 8, 20 and 30 years of evolution, respectively. The total duration of the disease may reach some 40 years. Thus, patients suffer a permanent disability for an average of 30 years, and are totally helpless and dependent for more than 10 years.
Databases and Multiple Sclerosis
MS has always been plagued by the use of fuzzy definitions and vague nomenclatures. Agreeing on a common language for use in patient files, and setting up a program to use them, means creating a database.
The creation of a database is of great interest both for the medical monitoring of patients and for research on the disease. Indeed, by emphasizing the critical and relevant information, and provided it aims at an exhaustive description, it facilitates the monitoring of patients and the exchange of information among physicians. For centers using the same language, it makes it easy to select, exchange, compare and share data and files. A critical mass of patients required to answer certain questions is thus within reach. Computer facilities further help in the entry, storage and retrieval of data.