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MSBase: an international, online registry and platform for collaborative outcomes research in multiple sclerosis

Department of Neurology, Royal Melbourne Hospital, Parkville, 3050, Australia, h.butzkueven{at}hfi.unimelb.edu.au

J Chapman

Department of Neurology, Sheba Medical Center, Ramat Gan, 52621 Israel

E Cristiano

Department of Neurology, Hospital Italiano, Buenos Aires, 1425, Argentina

F Grand’Maison

Department of Neurology, Charles LeMoyne Hospital, Québec, J4V 2J2, Canada

M Hoffmann

Department of Neurology, Royal Melbourne Hospital, Parkville, 3050, Australia

G Izquierdo

Servicio de Neurología, Hospital Virgen de la Macarena, Sevilla, 41071, Spain

D Jolley

University of Health Services Research, Monash Medical Centre, Clayton, 3168, Australia

L Kappos

Neurologische Klinik, Universitätsspital, Basel, 4000, Switzerland

T Leist

Department of Neurology, Thomas Jefferson University, Philadelphia, PA 19107, USA

D Pöhlau

Department of Neurology, Hospitalstr. 6, Asbach, 53567, Germany

V Rivera

Baylor Multiple Sclerosis Center, The Methodist Hospital, Houston, TX 77030, USA

M Trojano

Department of Neurological and Psychiatric Sciences, University of Bari, Bari, 70122, Italy

F Verheul

Department of Neurology, Groene Hart Ziekenhuis, Gouda, 2800, The Netherlands

J-P Malkowski

Serono Symposia International Foundation, Rome, 00176, Italy

Observational cohort studies are a powerful tool to assess the long-term outcome in chronic diseases. This study design has been utilized in local and regional outcome studies in multiple sclerosis (MS) and has yielded invaluable epidemiological information. The World Wide Web now provides an excellent opportunity for an international, collaborative cohort study of MS outcomes. A web platform-MSBase-has been designed to collect prospective data on patients with MS. It is purely observational, enabling participating neurologists to contribute data on diagnosis, treatment and progress, to review anonymous aggregate data and to benchmark their patient population against other patient subsets or the entire dataset. MSBase facilitates collaborative research by allowing the online creation of investigator-initiated regional, national and international substudies. The registry aims to answer epidemiological questions that can only be addressed by prospective assessments of large patient cohorts. The registry is funded through the independent MSBase Foundation, and governed by an International Scientific Advisory Board. The MSBase Foundation commenced operations in July 2004 and since then, 22 neurologists from 11 countries have joined MSBase and are contributing 2400 patients to the total data pool.

Key Words: databasing • international • long-term • multiple sclerosis • online registry • outcomes research

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