title: Assess, compare and enhance the status of Persons with Multiple Sclerosis (MS) in Europe: a European Register for MS.
abstract: OBJECTIVE
  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.
  
  
  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.
authors.affiliation: Department of Clinical and Experimental Medicine, University of Sassari, Viale Ssan Pietro 10, Sassari, Italy. mpugliatti@yahoo.com
authors.forename: M
authors.initials: M
authors.lastname: Pugliatti
authors.forename: D
authors.initials: D
authors.lastname: Eskic
authors.forename: T
authors.initials: T
authors.lastname: Mikolcić
authors.forename: D
authors.initials: D
authors.lastname: Pitschnau-Michel
authors.forename: K-M
authors.initials: KM
authors.lastname: Myhr
authors.forename: J
authors.initials: J
authors.lastname: Sastre-Garriga
authors.forename: S
authors.initials: S
authors.lastname: Otero
authors.forename: L
authors.initials: L
authors.lastname: Wieczynska
authors.forename: C
authors.initials: C
authors.lastname: Torje
authors.forename: E
authors.initials: E
authors.lastname: Holloway
authors.forename: O
authors.initials: O
authors.lastname: Rienhoff
authors.forename: T
authors.initials: T
authors.lastname: Friede
authors.forename: K
authors.initials: K
authors.lastname: Buckow
authors.forename: D
authors.initials: D
authors.lastname: Ellenberger
authors.forename: J
authors.initials: J
authors.lastname: Hillert
authors.forename: A
authors.initials: A
authors.lastname: Glaser
authors.forename: P
authors.initials: P
authors.lastname: Flachenecker
authors.forename: J
authors.initials: J
authors.lastname: Fuge
authors.forename: T
authors.initials: T
authors.lastname: Schyns-Liharska
authors.forename: E
authors.initials: E
authors.lastname: Kasilingam
authors.forename: A
authors.initials: A
authors.lastname: Moretti
authors.forename: C
authors.initials: C
authors.lastname: Thalheim
mesh_terms: D003625:Data Collection; D005060:Europe / Q000453:epidemiology; D006801:Humans; D009103:Multiple Sclerosis / Q000453:epidemiology* / Q000503:physiopathology / Q000628:therapy*; D011788:Quality of Life; D012042:Registries; D012106:Research