Summary

The collection of comprehensive demographic data on multiple sclerosis (MS) is essential for the proper assessment of epidemiology and provides the only useful data to demonstrate effects of therapy in the long term. Key MS registries continue to provide valuable insights into the natural history of MS. Randomized controlled trials provide important information on the effectiveness of disease-modifying therapies (DMTs), but they are limited only by their focus on a particular subgroup of patients with MS and may not extend into the long term. Regional and national MS registries allow the collection of diverse information on large groups of patients over the long term, regardless of disease type, disability, and treatment. Registries collect information about demographics, socioeconomic data, disease course, disability, medications, and hospitalization. However, it is apparent that registry studies can be limited by inherent problems in their governance, interpretation of their results, and when comparing information from different databases. Improvements to inter-registry consistency, in order to provide more uniform responses, may be an important consideration for the future.

Important observational findings of the registries include the rate at which disability progresses in patients with MS, predictors of increased disability, and changes in lifespan associated with MS. Results from MS registries have shown evidence that Expanded Disability Status Scale (EDSS) progression after EDSS 4 is at a predictable rate and proceeds inevitably to severe disability.^1,–,3 This suggests that treatment with DMTs early in the disease course is important in managing disability. Several registries indicate that 50% or fewer patients receive DMTs and a substantial proportion of patients may stop therapy …