Analysis of current multiple sclerosis registries.

Journal Article (Review)

BACKGROUND: Patient registries are valuable because they provide data that cannot be captured in any other way. Observations from registry studies are particularly informative if multiple registries confirm similar findings. A selection of multiple sclerosis (MS) registry studies were reviewed, and results and consistency of those studies are presented. METHODS: A panel of experts analyzed the study findings of established MS registries and presented their conclusions on the overall results and consistency of those studies. RESULTS: A review of evidence from MS registry studies reveals similar findings with respect to patterns of disability progression, predictors of disability progression, and changes in lifespan. Several registries show that progression after Expanded Disability Status Scale (EDSS) 4 occurs at a predictable rate, and once EDSS 4 is reached, subsequent progression rates are similar regardless of the type of MS at onset. Clinicians, payers, and patients need to understand that MS may shorten life expectancy. The mortality data derived from registries reveal higher death rates in patients with MS compared with the general population, indicating that MS is an important public health issue. CONCLUSIONS: The key findings in registries should be utilized in conjunction with data from clinical trials to optimize treatment and improve long-term outcomes.

Full Text

Duke Authors

Cited Authors

  • Hurwitz, BJ

Published Date

  • January 4, 2011

Published In

Volume / Issue

  • 76 / 1 Suppl 1

Start / End Page

  • S7 - 13

PubMed ID

  • 21205683

Pubmed Central ID

  • 21205683

Electronic International Standard Serial Number (EISSN)

  • 1526-632X

Digital Object Identifier (DOI)

  • 10.1212/WNL.0b013e31820502f6


  • eng

Conference Location

  • United States