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Assess, compare and enhance the status of persons with Multiple Sclerosis (MS) in Europe: a European Register for MS

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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DOI: 10.1111/ane.12024

Abstract

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.
Materials and methods – EUReMS is meant to build on a minimum set of core data from existing national and regional population-based MS registries and from PwMS’ perspectives. EUReMS’ main partner is the European MS Platform (EMSP) acting in collaboration with associated and collaborating European partners.
Results – EUReMS was launched in July 2011. A Consensus Statement on purposes, vision, mission and strategies was produced in December 2011, and a comprehensive survey on existing MS data collections in Europe has been performed, and the EUReMS data mask is currently being discussed.
Conclusions – EUReMS will represent a tool to provide up to date, comparable and sustainable MS data through an effective and credible register, which will encourage extensive knowledge building of MS, more equitable policies and higher standards in MS treatment and services.

Item Type:Article
ID Code:8537
Status:Published
Refereed:Yes
Uncontrolled Keywords:Burden-of-illness studies, disease registry, epidemiology, multiple sclerosis, quality of life, surveillance, treatment, Europe
Subjects:Area 06 - Scienze mediche > MED/26 Neurologia
Divisions:001 Università di Sassari > 01-a Nuovi Dipartimenti dal 2012 > Medicina Clinica e Sperimentale
Publisher:Blackwell / Wiley
eISSN:1600-0404
Deposited On:23 Jan 2013 08:01

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