Title: Assess, compare and enhance the status of Persons with Multiple Sclerosis (MS) in Europe: a European Register for MS
Abstract: Acta Neurologica ScandinavicaVolume 126, Issue s195 p. 24-30 Original Article Assess, compare and enhance the status of Persons with Multiple Sclerosis (MS) in Europe: a European Register for MS M. Pugliatti, Corresponding Author M. Pugliatti Department of Clinical and Experimental Medicine, University of Sassari, Sassari, Italy M. Pugliatti, Dipartimento di Medicina Clinica e Sperimentale – Neurologia, Università degli Studi di Sassari, Viale San Pietro 10, 07100 Sassari, Italy Tel.: +39 079 228576 Fax: +39 079 228576 e-mails: [email protected], [email protected] for more papers by this authorD. Eskic, D. Eskic Association of Multiple Sclerosis Societies of Croatia, Zagreb, CroatiaSearch for more papers by this authorT. Mikolcić, T. Mikolcić Association of Multiple Sclerosis Societies of Croatia, Zagreb, CroatiaSearch for more papers by this authorD. Pitschnau-Michel, D. Pitschnau-Michel Deutsche Multiple Sklerose Gesellschaft, Bundesverband e.V., Hannover, Germany European Multiple Sclerosis Platform, Brussels, BelgiumSearch for more papers by this authorK.-M. Myhr, K.-M. Myhr The Norwegian Multiple Sclerosis Competence Centre, Department of Neurology, Haukeland University Hospital, Bergen, Norway The KG Jebsen Centre for MS-Research, Department of Clinical Medicine, University of Bergen, Bergen, NorwaySearch for more papers by this authorJ. Sastre-Garriga, J. Sastre-Garriga Multiple Sclerosis Centre of Catalonia (Cemcat), Barcelona, SpainSearch for more papers by this authorS. Otero, S. Otero Multiple Sclerosis Centre of Catalonia (Cemcat), Barcelona, SpainSearch for more papers by this authorL. Wieczynska, L. Wieczynska Polskie Towarzystwo Stwardnienia Rozsianego, Warsaw, PolandSearch for more papers by this authorC. Torje, C. Torje Societatea de Scleroza Multipla din Romania, Oradea, Bihor, RomaniaSearch for more papers by this authorE. Holloway, E. Holloway The Multiple Sclerosis Society of Great Britain and Northern Ireland, London, UKSearch for more papers by this authorO. Rienhoff, O. Rienhoff Universitätsmedizin Göttingen - Georg-August-Universität Göttingen, GermanySearch for more papers by this authorT. Friede, T. Friede Universitätsmedizin Göttingen - Georg-August-Universität Göttingen, GermanySearch for more papers by this authorK. Buckow, K. Buckow Universitätsmedizin Göttingen - Georg-August-Universität Göttingen, GermanySearch for more papers by this authorD. Ellenberger, D. Ellenberger Universitätsmedizin Göttingen - Georg-August-Universität Göttingen, GermanySearch for more papers by this authorJ. Hillert, J. Hillert Karolinska Institute, Stockholm, SwedenSearch for more papers by this authorA. Glaser, A. Glaser Karolinska Institute, Stockholm, SwedenSearch for more papers by this authorP. Flachenecker, P. Flachenecker Neurological Rehabilitation Center Quellenhof, Bad Wildbad, GermanySearch for more papers by this authorJ. Fuge, J. Fuge Deutsche Multiple Sklerose Gesellschaft, Bundesverband e.V., Hannover, GermanySearch for more papers by this authorT. Schyns-Liharska, T. Schyns-Liharska European Multiple Sclerosis Platform, Brussels, BelgiumSearch for more papers by this authorE. Kasilingam, E. Kasilingam European Multiple Sclerosis Platform, Brussels, BelgiumSearch for more papers by this authorA. Moretti, A. Moretti European Multiple Sclerosis Platform, Brussels, BelgiumSearch for more papers by this authorC. Thalheim, C. Thalheim European Multiple Sclerosis Platform, Brussels, BelgiumSearch for more papers by this authorfor the EUReMS Consortium, for the EUReMS ConsortiumFor Authors in the EUReMS Group see Appendix.Search for more papers by this author M. Pugliatti, Corresponding Author M. Pugliatti Department of Clinical and Experimental Medicine, University of Sassari, Sassari, Italy M. Pugliatti, Dipartimento di Medicina Clinica e Sperimentale – Neurologia, Università degli Studi di Sassari, Viale San Pietro 10, 07100 Sassari, Italy Tel.: +39 079 228576 Fax: +39 079 228576 e-mails: [email protected], [email protected] for more papers by this authorD. Eskic, D. Eskic Association of Multiple Sclerosis Societies of Croatia, Zagreb, CroatiaSearch for more papers by this authorT. Mikolcić, T. Mikolcić Association of Multiple Sclerosis Societies of Croatia, Zagreb, CroatiaSearch for more papers by this authorD. Pitschnau-Michel, D. Pitschnau-Michel Deutsche Multiple Sklerose Gesellschaft, Bundesverband e.V., Hannover, Germany European Multiple Sclerosis Platform, Brussels, BelgiumSearch for more papers by this authorK.-M. Myhr, K.-M. Myhr The Norwegian Multiple Sclerosis Competence Centre, Department of Neurology, Haukeland University Hospital, Bergen, Norway The KG Jebsen Centre for MS-Research, Department of Clinical Medicine, University of Bergen, Bergen, NorwaySearch for more papers by this authorJ. Sastre-Garriga, J. Sastre-Garriga Multiple Sclerosis Centre of Catalonia (Cemcat), Barcelona, SpainSearch for more papers by this authorS. Otero, S. Otero Multiple Sclerosis Centre of Catalonia (Cemcat), Barcelona, SpainSearch for more papers by this authorL. Wieczynska, L. Wieczynska Polskie Towarzystwo Stwardnienia Rozsianego, Warsaw, PolandSearch for more papers by this authorC. Torje, C. Torje Societatea de Scleroza Multipla din Romania, Oradea, Bihor, RomaniaSearch for more papers by this authorE. Holloway, E. Holloway The Multiple Sclerosis Society of Great Britain and Northern Ireland, London, UKSearch for more papers by this authorO. Rienhoff, O. Rienhoff Universitätsmedizin Göttingen - Georg-August-Universität Göttingen, GermanySearch for more papers by this authorT. Friede, T. Friede Universitätsmedizin Göttingen - Georg-August-Universität Göttingen, GermanySearch for more papers by this authorK. Buckow, K. Buckow Universitätsmedizin Göttingen - Georg-August-Universität Göttingen, GermanySearch for more papers by this authorD. Ellenberger, D. Ellenberger Universitätsmedizin Göttingen - Georg-August-Universität Göttingen, GermanySearch for more papers by this authorJ. Hillert, J. Hillert Karolinska Institute, Stockholm, SwedenSearch for more papers by this authorA. Glaser, A. Glaser Karolinska Institute, Stockholm, SwedenSearch for more papers by this authorP. Flachenecker, P. Flachenecker Neurological Rehabilitation Center Quellenhof, Bad Wildbad, GermanySearch for more papers by this authorJ. Fuge, J. Fuge Deutsche Multiple Sklerose Gesellschaft, Bundesverband e.V., Hannover, GermanySearch for more papers by this authorT. Schyns-Liharska, T. Schyns-Liharska European Multiple Sclerosis Platform, Brussels, BelgiumSearch for more papers by this authorE. Kasilingam, E. Kasilingam European Multiple Sclerosis Platform, Brussels, BelgiumSearch for more papers by this authorA. Moretti, A. Moretti European Multiple Sclerosis Platform, Brussels, BelgiumSearch for more papers by this authorC. Thalheim, C. Thalheim European Multiple Sclerosis Platform, Brussels, BelgiumSearch for more papers by this authorfor the EUReMS Consortium, for the EUReMS ConsortiumFor Authors in the EUReMS Group see Appendix.Search for more papers by this author First published: 20 December 2012 https://doi.org/10.1111/ane.12024Citations: 19 Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinked InRedditWechat 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. Citing Literature Volume126, Issues195Special Issue: National Registries- To Improve Health Care and Research in Multiple Sclerosis. MS –Symposium Bergen/Os, April 2012December 2012Pages 24-30 RelatedInformation
Publication Year: 2012
Publication Date: 2012-12-01
Language: en
Type: article
Indexed In: ['crossref', 'pubmed']
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Cited By Count: 21
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