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Neurology. 2019 Mar 5;92(10):469-480. doi: 10.1212/WNL.0000000000007044. Epub 2019 Feb 15.

A new way to estimate neurologic disease prevalence in the United States: Illustrated with MS.

Author information

1
From the Division of Epidemiology, Department of Health Research and Policy (L.M.N.), Stanford University School of Medicine, Stanford, CA; Department of Veterans Affairs Multiple Sclerosis Center of Excellence (VA MSCoE) and Georgetown University School of Medicine (M.T.W.), Washington, DC; Department of Internal Medicine (R.A.M.), Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Canada; VA MS Center of Excellence and University of Maryland (W.J.C.), Baltimore; Neurology Department (A.L.-G.), Kaiser Permanente Southern California, Los Angeles; University of Colorado (J.C.), Denver; Brown University (S.B.), Providence, RI; University of British Columbia (H.T.), Vancouver, Canada; University of Alabama at Birmingham (G.C.); McKing Consulting Corporation (W.K., L.W.), Atlanta, GA; and National Multiple Sclerosis Society (N.G.L.), New York, NY. lnelson@stanford.edu.
2
From the Division of Epidemiology, Department of Health Research and Policy (L.M.N.), Stanford University School of Medicine, Stanford, CA; Department of Veterans Affairs Multiple Sclerosis Center of Excellence (VA MSCoE) and Georgetown University School of Medicine (M.T.W.), Washington, DC; Department of Internal Medicine (R.A.M.), Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Canada; VA MS Center of Excellence and University of Maryland (W.J.C.), Baltimore; Neurology Department (A.L.-G.), Kaiser Permanente Southern California, Los Angeles; University of Colorado (J.C.), Denver; Brown University (S.B.), Providence, RI; University of British Columbia (H.T.), Vancouver, Canada; University of Alabama at Birmingham (G.C.); McKing Consulting Corporation (W.K., L.W.), Atlanta, GA; and National Multiple Sclerosis Society (N.G.L.), New York, NY.

Abstract

OBJECTIVE:

Considerable gaps exist in knowledge regarding the prevalence of neurologic diseases, such as multiple sclerosis (MS), in the United States. Therefore, the MS Prevalence Working Group sought to review and evaluate alternative methods for obtaining a scientifically valid estimate of national MS prevalence in the current health care era.

METHODS:

We carried out a strengths, weaknesses, opportunities, and threats (SWOT) analysis for 3 approaches to estimate MS prevalence: population-based MS registries, national probability health surveys, and analysis of administrative health claims databases. We reviewed MS prevalence studies conducted in the United States and critically examined possible methods for estimating national MS prevalence.

RESULTS:

We developed a new 4-step approach for estimating MS prevalence in the United States. First, identify administrative health claim databases covering publicly and privately insured populations in the United States. Second, develop and validate a highly accurate MS case-finding algorithm that can be standardly applied in all databases. Third, apply a case definition algorithm to estimate MS prevalence in each population. Fourth, combine MS prevalence estimates into a single estimate of US prevalence, weighted according to the number of insured persons in each health insurance segment.

CONCLUSIONS:

By addressing methodologic challenges and proposing a new approach for measuring the prevalence of MS in the United States, we hope that our work will benefit scientists who study neurologic and other chronic conditions for which national prevalence estimates do not exist.

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