Pugliatti, Maura and Eškić, Danica and Mikolcic, T. and Pitschnau-Michel, D. and Myhr, Kjell-Morten and Sastre-Garriga, J. and Otero, Susana and Wieczynska, Luiza and Torje, Claudia and Holloway, Edward and Rienhoff, Otto and Friede, Tim and Buckow, Karoline and Ellenberger, David and Hillert, Jan and Glaser, Anna and Flachenecker, Peter and Fuge, Jan and Schyns-Liharska, Tsveta and Kasilingam, Elisabeth and Moretti, Antonella and Thalheim, Christoph (2012) Assess, compare and enhance the status of persons with Multiple Sclerosis (MS) in Europe: a European Register for MS. Acta Neurologica Scandinavica, Vol. 126 (Suppl. 195), p. 24-30. eISSN 1600-0404. Article.
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Objectives – Persons with multiple sclerosis (PwMS) experience health-related quality of life (HRQoL) problems greatly differing across Europe, and the European Union (EU) faces deep inequalities in MS management from country to country. Through the establishment of a European MS Register (EUReMS), an effective action is proposed to improve the overall knowledge on MS and support effective intervention programmes at EU and national political level. EUReMS aims to achieve consensus on its mission and vision, to define existing data providers, to develop models driving future MS health policies and research, to develop an information technology (IT) infrastructure for a data set, to develop a European shared governance and to secure providers’ data provision into EUReMS.
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