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Content archived on 2022-12-23

Establishment and use of edmus as a database system for multiple sclerosis research in Europe

Objective



A database combines standardized language with computerized recording,storage, and retrieval of data. It is an essential tool for clinical pratice in MS(MULTIPLE Sclerosis).It also has a pivotal role for clinical and basic research in MS, especially in projects requiring a multicenter collaboration for reaching the "critical mass" of patients.
EDMUS: a European database for multiple sclerosis has been one of the main themes of the 1990-1992 European Concerted Action for Basic Research and Treatment in Multiple Sclerosis.
By April 30, 1994, it was implemented in 73 European and 1 US centers. The European Concerted Action "Establishment and use of EDMUS as a database system for multiple sclerosis research in Europe" has been accepted for the January 1994 to December 1996 period and supports the organization of severe collaborative international multi-center actions through the use of the EDMUS system.
These actions are methodological (EVALUED , EVALUation of the EDmus system), epidemiological (PRIMS, PRegnancy In Multiple Sclerosis), prognostic (PRESTISMUS, "PRedictive ESTImates in MUltiple Sclerosis"), and therapeutic (ERAZMUS, EaRly AZathioprine in MUltiple Sclerosis).
There are other areas, including genetic analysis of twins and multiplex families (GAMEs project) and epidemiological analysis in various ethnical and geographical settings. Theses actions could provide key advances to some major and at resent, somewhat unanswered issues such as the knowledge, monitoring and treatment of MS and our way to cope with this chronic and debilitating disease. Success is made easier through the use of this commonly agreed language and by an international collaboration, the European dimension being ideally appropriate. Presently, West European centers using the EDMUS system are actively involved. The expansion of the project to partner and Eastern Europe will allow the inclusion of diseased populations from new ethnical and geographical settings.
This should be carried out easily and bring about successful results in the PRIMS and PRESTIMUS actions. Besides, such a development would allow our colleagues from these countries to become familiar with this commonly agreed language and to participate into useful international collaborative actions. Objectives are focused and limited, but realistic.

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Coordinator

Université de Lyon I (Université Claude Bernard)
EU contribution
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Address
59 boulevard Pinel
69003 Lyon
France

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Total cost

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Participants (2)

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