Registry studies of long-term multiple sclerosis outcomes: description of key registries

Abstract

Background: Multiple sclerosis (MS) registries can provide valuable insights into the natural history of MS. Key observational findings of the registries include MS patient disability progression rate, predictors of increased disability, and changes in lifespan. MS registries have been established in Canada, the United States, and Europe, some of which have existed for decades. Recommendations for registry use and improvement based on a review of a selection of MS registries from these countries are presented.

Methods: A panel of experts analyzed the current status of a number of the established MS registries and made recommendations on their usefulness and on improvements for the creation of future MS registries.

Results: Improved inter-registry consistency in order to better compare and contrast the results of different registries was advocated. To follow the course of MS, the initiation of a prospective, complete, verifiable database of patients with clinically isolated syndrome was also recommended. Time to Expanded Disability Status Scale 6 was supported over mortality as the central endpoint of a registry study, because it can be detected earlier in the course of the disease than mortality.

Conclusions: The data collected from registries are considered valuable in understanding MS, despite difficulties with registries such as a lack of consistency between their databases.