Multiple sclerosis registries in Europe - An updated mapping survey

被引:50
作者
Glaser, A. [1 ,2 ]
Stahmann, A. [3 ]
Meissner, T. [4 ]
Flachenecker, P. [5 ]
Horakova, D. [6 ,7 ,8 ]
Zaratin, P. [9 ,10 ]
Brichetto, G. [10 ,11 ]
Pugliatti, M. [12 ,13 ]
Rienhoff, O. [4 ]
Vukusic, S. [14 ,15 ,16 ,17 ,18 ]
de Giacomoni, A. C. [14 ,15 ,16 ,17 ,18 ]
Battaglia, M. A. [9 ,10 ,19 ]
Brola, W. [20 ,21 ]
Butzkueven, H. [22 ]
Casey, R. [14 ,15 ,16 ,17 ,18 ]
Drulovic, J. [23 ]
Eichstaedt, K. [3 ]
Hellwig, K. [24 ]
Iaffaldano, P. [25 ]
Ioannidou, E. [26 ]
Kuhle, J. [27 ,28 ,29 ]
Lycke, K. [1 ]
Magyari, M. [30 ]
Malbasa, T. [31 ]
Middleton, R. [32 ]
Myhr, K. M. [33 ,34 ]
Notas, K. [26 ,35 ]
Orologas, A. [35 ]
Otero-Romero, S. [36 ,37 ]
Pekmezovic, T. [38 ]
Sastre-Garriga, J. [37 ]
Seeldrayers, P. [39 ]
Soilu-Hanninen, M. [40 ,41 ]
Stawiarz, L. [1 ]
Trojano, M. [25 ]
Ziemssen, T. [42 ]
Hillert, J. [1 ,2 ]
Thalheim, C. [43 ]
机构
[1] Karolinska Inst, Dept Clin Neurosci, Stockholm, Sweden
[2] Karolinska Inst, Ctr Mol Med, Stockholm, Sweden
[3] MS Forsch & Projektentwicklungs gGmbH, MS Register German MS Soc, Hannover, Germany
[4] Univ Med Ctr Gottingen, Dept Med Informat, Gottingen, Germany
[5] Neurol Rehabil Ctr Quellenhof, Bad Wildbad, Germany
[6] Charles Univ Prague, Dept Neurol, Fac Med 1, Prague, Czech Republic
[7] Charles Univ Prague, Ctr Clin Neurosci, Fac Med 1, Prague, Czech Republic
[8] Gen Univ Hosp Prague, Prague, Czech Republic
[9] Italian Multiple Sclerosis Fdn, Via Operai 40, I-16149 Genoa, Italy
[10] MS Int Federat, London, England
[11] Italian MS Soc, Sci Res Area, Genoa, Italy
[12] Univ Ferrara, Dept Biomed & Surg Sci, Ferrara, Italy
[13] S Anna Univ Hosp, Via Aldo Moro 8-1C3, I-44124 Ferrara, FE, Italy
[14] Hosp Civils Lyon, Serv Neurol Sclerose Plaques Pathol Myeline & Neu, F-69677 Bron, France
[15] INSERM 1028, Observ Francais Sclerose Plaques, Ctr Rech Neurosci Lyon, F-69003 Lyon, France
[16] CNRS, UMR5292, F-69003 Lyon, France
[17] Univ Claude Bernard Lyon 1, Univ Lyon, F-69000 Lyon, France
[18] Eugene Devic EDMUS Fdn Multiple Sclerosis, State Approved Fdn, F-69677 Bron, France
[19] Univ Siena, Dept Life Sci, Siena, Italy
[20] Specialist Hosp, Dept Neurol, Konskie, Poland
[21] Jan Kochanowski Univ, Inst Physiotherapy, Fac Med & Hlth Sci, Kielce, Poland
[22] Monash Univ, Cent Clin Sch, Alfred Ctr, 99 Commercial Rd, Melbourne, Vic 3004, Australia
[23] Univ Belgrade, Clin Neurol, CCS, Fac Med, Belgrade, Serbia
[24] Ruhr Univ Bochum, Dept Neurol, St Josef Hosp Bochum, Bochum, Germany
[25] Univ Bari Aldo Moro, Dept Basic Med Sci Neurosci & Sense Organs, Bari, Italy
[26] Greek Multiple Sclerosis Soc, Thessaloniki, Greece
[27] Univ Basel, Univ Hosp Basel, Neurol, Dept Med, Basel, Switzerland
[28] Univ Basel, Univ Hosp Basel, Dept Biomed, Neurol, Basel, Switzerland
[29] Univ Basel, Univ Hosp Basel, Dept Clin Res, Neurol, Basel, Switzerland
[30] Univ Copenhagen, Danish Multiple Sclerosis Registry, Dept Neurol, Rigshosp, Copenhagen, Denmark
[31] Assoc Multiple Sclerosis Soc Croatia, Trnsko 34,Pp 74, Zagreb 10020, Croatia
[32] Swansea Univ, Med Sch, Swansea SA2 8PP, W Glam, Wales
[33] Univ Bergen, Dept Clin Med, Bergen, Norway
[34] Haukeland Hosp, Norwegian MS Registry & Biobank, Dept Neurol, Bergen, Norway
[35] Aristotle Univ Thessaloniki, Thessaloniki, Greece
[36] Univ Autonoma Barcelona, Prevent Med & Epidemiol Dept, Hosp Univ Vall dHebron, Barcelona, Spain
[37] Univ Autonoma Barcelona, Dept Neurol Neuroimmunol, Multiple Sclerosis Ctr Catalonia Cemcat, Hosp Univ Vall dHebron, Barcelona, Spain
[38] Univ Belgrade, Inst Epidemiol, Fac Med, Belgrade, Serbia
[39] Belgian Study Grp Multiple Sclerosis, Brussels, Belgium
[40] Turku Univ Hosp, Div Clin Neurosci, Turku, Finland
[41] Univ Turku, Turku, Finland
[42] Tech Univ Dresden, Dept Neurol, MS Ctr Dresden, Ctr Clin Neurosci,Univ Hosp Carl Gustav Carus, Dresden, Germany
[43] European Multiple Sclerosis Platform, Schaerbeek, Belgium
关键词
REAL-WORLD; EPIDEMIOLOGY;
D O I
10.1016/j.msard.2018.09.032
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
[No abstract available]
引用
收藏
页码:171 / 178
页数:8
相关论文
共 18 条
  • [1] [Anonymous], 2009, REPORT PREPARED EURO
  • [2] Bebo Jr B. F, 2017, MULT SCLER
  • [3] MSBase:: an international, online registry and platform for collaborative outcomes research in multiple sclerosis
    Butzkueven, H.
    Chapman, J.
    Cristiano, E.
    Grand'Maison, F.
    Hoffmann, M.
    Izquierdo, G.
    Jolley, D.
    Kappos, L.
    Leist, T.
    Poehlau, D.
    Rivera, V.
    Trojano, M.
    Verheul, F.
    Malkowski, J-P
    [J]. MULTIPLE SCLEROSIS, 2006, 12 (06): : 769 - 774
  • [4] Multiple sclerosis registries in Europe - results of a systematic survey
    Flachenecker, Peter
    Buckow, Karoline
    Pugliatti, Maura
    Kes, Vanja Basic
    Battaglia, Mario A.
    Boyko, Alexey
    Confavreux, Christian
    Ellenberger, David
    Eskic, Danica
    Ford, David
    Friede, Tim
    Fuge, Jan
    Glaser, Anna
    Hillert, Jan
    Holloway, Edward
    Ioannidou, Eva
    Kappos, Ludwig
    Kasilingam, Elisabeth
    Koch-Henriksen, Nils
    Kuhle, Jens
    Lepore, Vito
    Middleton, Rod
    Myhr, Kjell-Morton
    Orologas, Anastasios
    Otero, Susana
    Pitschnau-Michel, Dorothea
    Rienhoff, Otto
    Sastre-Garriga, Jaume
    Schyns-Liharska, Tsveta
    Sutovic, Dragana
    Thalheim, Christoph
    Trojano, Maria
    Vlasov, Yan V.
    Yaldizli, Oezguer
    [J]. MULTIPLE SCLEROSIS JOURNAL, 2014, 20 (11) : 1523 - 1532
  • [5] The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS
    Ford, David V.
    Jones, Kerina H.
    Middleton, Rod M.
    Lockhart-Jones, Hazel
    Maramba, Inocencio D. C.
    Noble, Gareth J.
    Osborne, Lisa A.
    Lyons, Ronan A.
    [J]. BMC MEDICAL INFORMATICS AND DECISION MAKING, 2012, 12
  • [6] Improving multiple sclerosis management and collecting safety information in the real world: the MSDS3D software approach
    Haase, Rocco
    Wunderlich, Maria
    Dillenseger, Anja
    Kern, Raimar
    Akguen, Katja
    Ziemssen, Tjalf
    [J]. EXPERT OPINION ON DRUG SAFETY, 2018, 17 (04) : 369 - 378
  • [7] Multiple sclerosis and pregnancy: experience from a nationwide database in Germany
    Hellwig, Kerstin
    Haghikia, Aiden
    Rockhoff, Milena
    Gold, Ralf
    [J]. THERAPEUTIC ADVANCES IN NEUROLOGICAL DISORDERS, 2012, 5 (05) : 247 - 253
  • [8] Incidence and prevalence of multiple sclerosis in Europe: a systematic review
    Kingwell, Elaine
    Marriott, James J.
    Jette, Nathalie
    Pringsheim, Tamara
    Makhani, Naila
    Morrow, Sarah A.
    Fisk, John D.
    Evans, Charity
    Beland, Sarah Gabrielle
    Kulaga, Sophie
    Dykeman, Jonathan
    Wolfson, Christina
    Koch, Marcus W.
    Marrie, Ruth Ann
    [J]. BMC NEUROLOGY, 2013, 13
  • [9] Epidemiology of multiple sclerosis
    Leray, E.
    Moreau, T.
    Fromont, A.
    Edan, G.
    [J]. REVUE NEUROLOGIQUE, 2016, 172 (01) : 3 - 13
  • [10] Variations in multiple sclerosis practice within Europe - Is it time for a new treatment guideline?
    Marziniak, Martin
    Ghorab, Karima
    Kozubski, Wojciech
    Pfleger, Claudia
    Sousa, Livia
    Vernon, Karen
    Zaffaroni, Mauro
    Meuth, Sven G.
    [J]. MULTIPLE SCLEROSIS AND RELATED DISORDERS, 2016, 8 : 35 - 44