EDMUS

Presentation of the EDMUS software

A concerted european effort since 1990

Designing and developing a specific database to describe Multiple Sclerosis is one thing, having it adopted by a majority of neurologists and researchers is quite another. Success requires concertation with recognized experts in the domain. Their contribution is essential to reach an agreement on the common language to adopt (nomenclature, definitions, classifications), the data to include, and the essential features of the database.

Thus, the EDMUS project has been led since 1990 with a continuous interaction at the European level between:

• The EDMUS Coordinating Center 
  Located in the Neurology A Department in Hôpital Neurologique Pierre Wertheimer, Lyon, the Center is composed of neurologists, epidemiologists, computer specialists and statisticians.
• The EDMUS Steering Committee 
  It is made up of delegates of the main countries using the EDMUS system. See this page for a list of its current members.
• The EDMUS User Group 
  It is comprised of all users of the EDMUS software. They report their experience in using the software and their wishes for its evolution.

The project was initiated within the scope of the first European Concerted Action devoted to Multiple Sclerosis in the BIOMED programme (1990-1992). It was then coordinated in Lyon with support from other BIOMED contracts (BMH1-CT93-1529, CIPD-CT94-0227 et BMH4-CT96-0064). It has also received the permanent support of the Ligue Française contre la Sclérose en Plaques (LFSEP) and of the Association pour la Recherche contre la Sclérose en Plaques (ARSEP), and other patients' associations and charities, and been granted a multisponsoring from the pharmaceutical industry (Biogen, Schering, Sanofi-Aventis, Serono, Teva) and industrial groups (Bouygues). See this page for a full list of the project partners.

A software in evolution

The EDMUS software was designed so as not to undermine and, if possible, to facilitate the daily work of the physician - ensuring its regular and sustained use. It is easy and quick to use. Medical information may, at the discretion of the physician, be limited to essential data or be exhaustive, constituting a full medical (electronic) record for the patient.

Deliberately, clinical manifestations are described first at the functional level, then - if need be - using objective examination data. Thus information provided by the patient and the patient's relatives, general practitioner and neurologist can be collected consistently. Also deliberately, only raw data are collected into the system. All that can be deduced from these data, such as the degree of certainty in the diagnosis (definite, probable, possible) or the classification of the disease evolutive form (recurring-remitting, secondary progressive, primary progressive) is automatically computed by program algorithms. This approach has multiple advantages: it saves the user time; it ensures a consistency of classification between users; it allows the automatic updating of classifications in a file as soon as new information is introduced. It also allows to take into account changes in classifications that may be decided by the medico-scientific community, by simply modifying the software algorithms.

The software is used on personal computers (with Windows or Mac OS). It requires no specific technical competency from the user, who is totally autonomous in the entry, storage and extraction of data. The database can also be shared over a network.

The EDMUS software has been continually evolving since 1990, and is being actively developed and improved. Its first version was released in 1992. Version 4.1 has been available since December 2009.