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National MS Society Raises Concerns that Recent NIH Study Underestimates Number of People with MS in the U.S.
January 30, 2007 Revised February 2, 2007
An article released in the January 30, 2007 issue of the journal Neurology reviews previously published estimates of the numbers of people affected by various neurological disorders including multiple sclerosis. Lead author Deborah Hirtz, MD, and coauthors, from the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention, estimate that the annual incidence of MS in the United States (new cases diagnosed during a 12-month period) was approximately 4.2 new cases per 100,000 population in 2005. They also estimate that the total number of people with MS (prevalence) in the U.S. in 2005 was approximately 266,000, and that the prevalence rate (90 cases per 100,000 population) was 50% higher than an estimate published 25 years ago. However, this prevalence rate of 90 per 100,000 is actually lower than a figure also published by the NIH in an article appearing in 1992 (Annals of Neurology 1992 Mar;31(3):333-6).
That study estimated that the total number of people with MS in the U.S. was approximately 300,000. Based on that 1992 study the Society estimates the prevalence of MS to be about 135 per 100,000 population in the U.S. at the present time, for a total MS population of approximately 400,000. The Society arrived at this figure by using the same age-specific prevalence rates used in the 1992 article, adjusting for population growth and population shifts in the U.S.
The National MS Society alone has over 300,000 people in its database who have self-identified themselves as having multiple sclerosis, which raises questions concerning the reported estimate of a total MS population of 266,000.
Without a nationwide system of tracking this disease, there will continue to be little hard evidence upon which to base incidence and prevalence figures. The National MS Society supports such a tracking system and is now collaborating with the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry to conduct pilot studies aimed at determining the feasibility of tracking MS (and ALS) to achieve better estimates of the numbers of people who have these diseases in the U.S.
The Society applauds the efforts of the NIH to document the importance of neurological disorders. However, the prevalence figure presented in this article appears to underestimate the numbers of persons with MS, even in comparison with the NIH’s own previous estimates. Moreover, the figures presented in the article do not really support the idea of a recent increase in the prevalence rate. We agree with the authors that “we need better studies of incidence and prevalence to improve the accuracy of estimates, to enable more confident generalizations to broader populations, and to assess trends.” The Society has reached out to the authors to try and develop an addendum to their report to address these issues of concern.
Article taken from www.nmss.org
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