Establishment and use of multiple sclerosis registers--EDMUS.

Abstract

EDMUS, the European Database for Multiple Sclerosis, is a clinical database system for multiple sclerosis (MS) that was established on the occasion of the first European Concerted Action for MS, under the auspices of the Commission of the European Communities. Automated functions have been incorporated in the program to preserve consistency between data, generate indexes, provide classifications, and protect a patient's privacy. Retrieval of data, selection of records, and export of selected data to standard software programs are easy. The system is user-friendly, and the user is self-sufficient in all operations. The system has been available since October 1992. By August 31, 1993, it had been implemented in 58 sites. As improvements are made in current operations and new aspects of the disease described, EDMUS is updated. A connection with the North American MS-COSTAR database system for MS is underway, with support of the International Federation of the Multiple Sclerosis Societies. Several international multi-center collaborations are being developed within the framework of a new 3-year European Concerted Action entitled "Establishment and Use of EDMUS as a Database System for Multiple Sclerosis Research in Europe."