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National Database Concludes Lou Gehrig’s Disease is Rare

Update Date: Jul 25, 2014 09:59 AM EDT

For the first time ever, the government has conducted a national search to estimate the total number of Lou Gehrig's disease cases within the U.S. The researchers were able to conclude that Lou Gehrig's disease is extremely rare with only around 12,000 confirmed cases.

In this report, the researchers from the U.S. Centers for Disease Control and Prevention (CDC) set out to estimate the prevalence rate for Lou Gehrig's disease, also known as amyotrophic lateral sclerosis (ALS) within the U.S. between October 19, 2010 and December 21, 2011. Data came from the National ALS Registry, which was implemented in 2009 to collect and analyze information on ALS patients. The Registry used a two-pronged approach in detecting ALS cases throughout the nation. In the first approach, the registry tracked data taken from Medicare, Medicaid, the Veterans Health Administration, and the Veterans Benefits Administration. The second approach was a secure web portal that was able to detect cases that might have been missed from the four databases.

"The main goals of the Registry, as defined by the 2008 ALS Registry Act, are to describe the incidence and prevalence of ALS better, examine risk factors such as environmental and occupational exposures, and characterize the demographics of those living with ALS," the report wrote.

The team calculated that during this time frame, there were 12,187 cases, which translated to a rate of almost four cases per 100,000 Americans. The researchers found that ALS was the most common in non-Hispanic white men in their 60s. The age groups with the lowest prevalence rates were 18 to 39, and 80 and older.

Lou Gehrig's disease attacks the body's nerve cells. Early symptoms include muscle twitching and weakness. The disease is currently incurable and experts have not identified the exact causes for the fatal neuromuscular disease. Roughly 75 percent of diagnosed people die within five years.

"Many hypotheses have been formulated about what causes ALS, including chemical exposures, occupational exposure, military service, infectious agents, nutritional intake, physical activity, and trauma," the CDC report detailed.

The report, "Prevalence of Amyotrophic Lateral Sclerosis - United States, 2010-2011," was published in the CDC's Morbidity and Mortality Weekly Report (MMWR).

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