From the Gothenburg cohort to the Swedish multiple sclerosis registry
Article first published online: 20 DEC 2012
© 2012 John Wiley & Sons A/S
Acta Neurologica Scandinavica
Special Issue: National Registries- To Improve Health Care and Research in Multiple Sclerosis. MS –Symposium Bergen/Os, April 2012
Volume 126, Issue Supplement s195, pages 13–19, December 2012
How to Cite
From the Gothenburg cohort to the Swedish MS registry. Acta Neurol Scand: 126 (Suppl. 195):13–19. © 2012 John Wiley & Sons A/S..
- Issue published online: 20 DEC 2012
- Article first published online: 20 DEC 2012
- Manuscript Accepted: 25 SEP 2012
- Swedish MS Registry
- multiple sclerosis;
- national registry;
An overview of prevalence and incidence studies performed in Swedish centres is provided, showing improving coverage and methodology, notably the development in Gothenburg of the representative incidence cohort design. A common database for major Swedish centres was established in 1995, implementing the terminology of predictors from the Gothenburg cohort. By 2001, these databases were merged into the web-based national multiple sclerosis (MS) registry, which has had an ever-increasing coverage, although with still moderate data density. The registry now contains records on 13,000 Swedish patients with MS. It has the status of a national quality registry and exerts nation-wide pharmacological surveillance. In addition, it has been, and is being, used in nearly 100 scientific studies, including large epidemiological and genetic projects.