A need for national registries and international collaborative research in multiple sclerosis

被引:7
|
作者
Myhr, K. M. [1 ,2 ,3 ,4 ]
Grytten, N. [3 ,4 ]
Torkildsen, O. [3 ,4 ]
Wergeland, S. [3 ,4 ]
Bo, L. [3 ,4 ]
Pugliatti, M. [5 ]
Aarseth, J. H. [1 ,2 ,4 ]
机构
[1] Haukeland Hosp, Dept Neurol, Norwegian Multiple Sclerosis Registry, N-5020 Bergen, Norway
[2] Haukeland Hosp, Dept Neurol, Biobank, N-5020 Bergen, Norway
[3] Haukeland Hosp, Dept Neurol, Norwegian Multiple Sclerosis Competence Ctr, N-5020 Bergen, Norway
[4] Univ Bergen, Dept Clin Med, Kristian Gerhard Jebsen Ctr MS Res, Bergen, Norway
[5] Univ Sassari, Dept Clin & Expt Med, I-07100 Sassari, Italy
来源
关键词
multiple sclerosis; National Registry; Biobank; collaborative research; NORWAY; RISK;
D O I
10.1111/ane.12039
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
Objective - There is a growing need to identify biomarkers for early diagnosis and treatment in multiple sclerosis (MS). Such markers may also be involved in the cause and pathogenesis of the disease. Methods - Established national MS registries have through several decades allowed data collection to facilitate MS research. The European MS Registry (EUReMS) is a recent international collaborative effort to ultimately promote MS research and quality in health care across European countries. International collaborations based on such initiatives can facilitate studies on new biomarkers in MS. Results - Important studies on data from MS registries, as well as national-and international collaboration networks have been conducted. Conclusion - The symposium "National MS Registries - to improve health care and research in Multiple Sclerosis" held in Bergen, Norway, earlier this year aimed to highlight the need and benefit from national MS registries and promote international collaborative research in MS.
引用
收藏
页码:1 / 3
页数:3
相关论文
共 50 条
  • [1] Opportunities and challenges for conducting research on secondary progressive multiple sclerosis across international multiple sclerosis registries through a research network collaboration
    Glaser, A.
    Trojano, M.
    Laffaldano, P.
    Vukusic, S.
    Horakova, D.
    Nicholas, R.
    Middleton, R.
    Stahmann, A.
    Soilu-Hanninen, M.
    Magyari, M.
    Lines, C.
    Adlard, N.
    Hillert, J.
    [J]. MULTIPLE SCLEROSIS JOURNAL, 2019, 25 : 152 - 153
  • [2] 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
  • [3] Setting a research agenda for progressive multiple sclerosis: The International Collaborative on Progressive MS
    Fox, Robert J.
    Thompson, Alan
    Baker, David
    Baneke, Peer
    Brown, Doug
    Browne, Paul
    Chandraratna, Dhia
    Ciccarelli, Olga
    Coetzee, Timothy
    Comi, Giancarlo
    Feinstein, Anthony
    Kapoor, Raj
    Lee, Karen
    Salvetti, Marco
    Sharrock, Kersten
    Toosy, Ahmed
    Zaratin, Paola
    Zuidwijk, Kim
    [J]. MULTIPLE SCLEROSIS JOURNAL, 2012, 18 (11) : 1534 - 1540
  • [4] "National Registries" the Need of the Hour
    Rao, Surath Manimala
    [J]. INDIAN JOURNAL OF CRITICAL CARE MEDICINE, 2021, 25 (05) : 491 - 492
  • [5] Upholding research integrity: the need for an international collaborative effort
    Khajuria, Ankur
    Khajuria, Arun
    [J]. BRITISH JOURNAL OF HOSPITAL MEDICINE, 2015, 76 (09) : 548 - 548
  • [6] The need for national registries in rare diseases
    Humbert, Marc
    Simonneau, Gerald
    [J]. AMERICAN JOURNAL OF RESPIRATORY AND CRITICAL CARE MEDICINE, 2006, 174 (02) : 228 - 229
  • [7] Analysis of current multiple sclerosis registries
    Hurwitz, Barrie J.
    [J]. NEUROLOGY, 2011, 76 (01) : S7 - S13
  • [8] A collaborative comparison of international pediatric diabetes registries
    Lanzinger, Stefanie
    Zimmermann, Anthony
    Ranjan, Ajenthen G.
    Gani, Osman
    Pons Perez, Saira
    Akesson, Karin
    Majidi, Shideh
    Witsch, Michael
    Hofer, Sabine
    Johnson, Stephanie
    Pilgaard, Kasper A.
    Kummernes, Siv Janne
    Robinson, Holly
    Eeg-Olofsson, Katarina
    Ebekozien, Osagie
    Holl, Reinhard W.
    Svensson, Jannet
    Skrivarhaug, Torild
    Warner, Justin
    Craig, Maria E.
    Maahs, David
    [J]. PEDIATRIC DIABETES, 2022, 23 (06) : 627 - 640
  • [9] RESULTS OF INTERNATIONAL MULTIPLE-SCLEROSIS RESEARCH
    BAUER, HJ
    [J]. WIENER MEDIZINISCHE WOCHENSCHRIFT, 1985, 135 (1-2) : 2 - 5
  • [10] Multiple sclerosis e-registries
    Fink, Katharina
    [J]. NEURODEGENERATIVE DISEASE MANAGEMENT, 2016, 6 (06) : 23 - 25