title: MSBase: an international, online registry and platform for collaborative outcomes research in multiple sclerosis.
abstract: 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.
authors.affiliation: Department of Neurology, Royal Melbourne Hospital, Parkville 3050, Victoria, Australia. h.butzkueven@hfi.unimelb.edu.au
authors.forename: H
authors.initials: H
authors.lastname: Butzkueven
authors.forename: J
authors.initials: J
authors.lastname: Chapman
authors.forename: E
authors.initials: E
authors.lastname: Cristiano
authors.forename: F
authors.initials: F
authors.lastname: Grand'Maison
authors.forename: M
authors.initials: M
authors.lastname: Hoffmann
authors.forename: G
authors.initials: G
authors.lastname: Izquierdo
authors.forename: D
authors.initials: D
authors.lastname: Jolley
authors.forename: L
authors.initials: L
authors.lastname: Kappos
authors.forename: T
authors.initials: T
authors.lastname: Leist
authors.forename: D
authors.initials: D
authors.lastname: Pöhlau
authors.forename: V
authors.initials: V
authors.lastname: Rivera
authors.forename: M
authors.initials: M
authors.lastname: Trojano
authors.forename: F
authors.initials: F
authors.lastname: Verheul
authors.forename: J P
authors.initials: JP
authors.lastname: Malkowski
mesh_terms: D003299:Cooperative Behavior; D016208:Databases, Factual; D006801:Humans; D007391:International Cooperation; D020407:Internet; D009103:Multiple Sclerosis / Q000175:diagnosis* / Q000453:epidemiology / Q000628:therapy*; D009462:Neurology; D012042:Registries