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.
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.
Authors: Kate Breckenridge; Hillary L Bekker; Elizabeth Gibbons; Sabine N van der Veer; Denise Abbott; Serge Briançon; Ron Cullen; Liliana Garneata; Kitty J Jager; Kjersti Lønning; Wendy Metcalfe; Rachael L Morton; Fliss E M Murtagh; Karl Prutz; Susan Robertson; Ivan Rychlik; Steffan Schon; Linda Sharp; Elodie Speyer; Francesca Tentori; Fergus J Caskey Journal: Nephrol Dial Transplant Date: 2015-05-16 Impact factor: 5.992
Authors: David Ellenberger; Tina Parciak; Waldemar Brola; Jan Hillert; Rod Middleton; Alexander Stahmann; Christoph Thalheim; Peter Flachenecker Journal: Mult Scler J Exp Transl Clin Date: 2022-04-27
Authors: J Mark FitzGerald; Trung N Tran; Marianna Alacqua; Alan Altraja; Vibeke Backer; Leif Bjermer; Unnur Bjornsdottir; Arnaud Bourdin; Guy Brusselle; Lakmini Bulathsinhala; John Busby; Giorgio W Canonica; Victoria Carter; Isha Chaudhry; You Sook Cho; George Christoff; Borja G Cosio; Richard W Costello; Neva Eleangovan; Peter G Gibson; Liam G Heaney; Enrico Heffler; Mark Hew; Naeimeh Hosseini; Takashi Iwanaga; David J Jackson; Rupert Jones; Mariko S Koh; Thao Le; Lauri Lehtimäki; Dora Ludviksdottir; Anke H Maitland-van der Zee; Andrew Menzies-Gow; Ruth B Murray; Nikolaos G Papadopoulos; Luis Perez-de-Llano; Matthew Peters; Paul E Pfeffer; Todor A Popov; Celeste M Porsbjerg; Chris A Price; Chin K Rhee; Mohsen Sadatsafavi; Yuji Tohda; Eileen Wang; Michael E Wechsler; James Zangrilli; David B Price Journal: BMC Med Res Methodol Date: 2020-08-14 Impact factor: 4.615
Authors: Tommaso Guerra; Antonella Pipoli; Rosa Gemma Viterbo; Nicola Manghisi; Damiano Paolicelli; Pietro Iaffaldano; Luigi Di Lorenzo Journal: Neurol Sci Date: 2022-03-23 Impact factor: 3.830