Barrie J Hurwitz1. 1. Department of Medicine Neurology, Box 3184, Duke University Medical Center, Durham, NC 27710, USA. hurwi003@mc.duke.edu
Abstract
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.
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.
Authors: Caila B Vaughn; Dejan Jakimovski; Katelyn S Kavak; Murali Ramanathan; Ralph H B Benedict; Robert Zivadinov; Bianca Weinstock-Guttman Journal: Nat Rev Neurol Date: 2019-06 Impact factor: 42.937