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Agency for Toxic Substances and Disease Registry releases first set of data from National ALS Registry

About 4 in 100,000 people live with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease in the United States, according to the first data summary released today by the Agency for Toxic Substances and Disease Registry.

The report in today’s Morbidity and Mortality Weekly Report (MMWR) displays data from the National ALS Registry. This is the only known data that identifies all ALS cases among people living in the United States. Data in the Registry come from two sources: national administrative databases and self-reports from people living with ALS.

The MMWR report’s findings cover the period from Oct. 19, 2010 through Dec. 31, 2011 and include:

  • A total of 12,187 people were identified with ALS. (Based on 2011 Census data);
  • Overall, ALS was more common among whites, males, non-Hispanics, and persons aged 60–69 years;
    White men and women were twice as likely to have ALS as black men and women (3.8 per 100,000 compared to 1.9 per 100,000); and
  • Males had a higher rate of ALS than females (across all racial groups).

There is no cure for ALS. The disease causes the nerve cells throughout the body to stop working, leading to paralysis and usually death within two to five years of diagnosis. ALS is not tracked yearly by health officials in the same manner as other diseases and conditions like heart disease and diabetes in the United States with the exception of Massachusetts. Persons with ALS who register via the National ALS Registry can complete brief surveys that may lead to a better understanding of possible risk factors for the disease such as genetics, environmental, and occupational exposures.

More information about the National ALS Registry can be found online at or by calling toll-free (877) 442-9719.

EDITOR’s NOTE: ATSDR researchers also authored Quantifying a Non-Notifiable Disease in the United States - the National Amyotrophic Lateral Sclerosis Registry Model in this week’s Journal of the American Medical Association (JAMA). Learn more at


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