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Friday, July 25, 2014

CDC Releases First Report to Estimate National Prevalence of ALS

by Olga Rukovets

Today, the Centers for Disease Control and Prevention (CDC) released a new
Morbidity and Mortality Weekly Report that quantifies the national prevalence of amyotrophic lateral sclerosis (ALS) in the US for the very first time. The prevalence of ALS, according to the report, is estimated at 3.9 cases per 100,000 people in the US general population (based on data gathered from October 19, 2010–December 31, 2011).

The groundwork for this effort began in 2008, when US Congress passed the ALS Registry Act with the intention of creating a national registry that would shed some light on the disease burden of ALS. Then, in 2009, the National ALS Registry was launched by the federal Agency for Toxic Substances and Disease Registry (ATSDR). This new registry used data from existing national administrative databases and a self-enrollment web portal open to the public (, and then merged the two sources.

Today’s report from the CDC included a total of 12,187 people who met ALS definitions according to the Registry. The authors could not measure incidence, they said, because the date of diagnosis was not included in the records. White males, non-Hispanics, and individuals aged 60–69 years were more likely to have ALS than other demographic groups. Individuals who were either 18–39 years of age or >80 years were least likely to have ALS. Overall, the prevalence of ALS was higher in males than in females.

In a viewpoint published in the July 24 online edition of the Journal of the American Medical Association (JAMA), Kevin Horton, DrPH, from the Agency for Toxic Substances and Disease Registry who was also the senior author of today’s Morbidity and Mortality Report, and colleagues discussed their ALS surveillance effort and also the challenges of quantifying a non-notifiable disease.

“Despite this evolution of surveillance topics, many conditions still are not notifiable to federal public health officials nor are there surveillance systems in place to capture such conditions. The lack of morbidity data for non-notifiable conditions makes it difficult to access accurately the populations at greatest risk and the true economic and societal burden of such diseases,” Dr. Horton and colleagues wrote.

They went on to note that although the registry was not able to report total incidence, they are currently using active surveillance in three states and eight metropolitan areas to determine incidence. The Registry is also being used to recruit enrollees into much-needed clinical trials. Another ongoing study is also currently determining whether a national biorepository, which would collect biological specimens from registry enrollees and then link that information to the other registry data, is feasible.

Dr. Horton and colleagues concluded that the National ALS Registry is a unique model for counting non-notifiable disease prevalence — and one that may be useful for other diseases, such as Parkinson’s and multiple sclerosis, in the future.

Look for a full-length story on these data from the National ALS Registry in an upcoming issue of Neurology Today. See our previous coverage of ALS surveillance efforts: