MSBase: an international, online registry and platform for collaborative outcomes research in multiple sclerosis
- 1 November 2006
- journal article
- research article
- Published by SAGE Publications in Multiple Sclerosis Journal
- Vol. 12 (6), 769-774
- https://doi.org/10.1177/1352458506070775
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.This publication has 16 references indexed in Scilit:
- Cognitive impairment: a key feature of congestive heart failure in the elderlyZeitschrift für Neurologie, 2003
- Randomized controlled trials to assess therapies for multiple sclerosisNeurology, 2002
- Multiple sclerosis in Oslo, Norway: prevalence on 1 January 1995 and incidence over a 25‐year periodEuropean Journal of Neurology, 2001
- Relapses and Progression of Disability in Multiple SclerosisThe New England Journal of Medicine, 2000
- A Comparison of Observational Studies and Randomized, Controlled TrialsThe New England Journal of Medicine, 2000
- Abstracts from the Annual Meeting of the Consortium of Multiple Sclerosis CentersInternational Journal of MS Care, 2000
- The NARCOMS Patient Registry: A Resource for InvestigatorsInternational Journal of MS Care, 1999
- Databases in MS research: pitfalls and promisesMultiple Sclerosis Journal, 1999
- Current Status of Computerization of Multiple Sclerosis Clinical Data for Research in Europe and North AmericaNeurology, 1995
- THE NATURAL HISTORY OF MULTIPLE SCLEROSIS: A GEOGRAPHICALLY BASED STUDYBrain, 1989