National ALS Registry Data Released from Toxic Substances and Disease Registry

Most well known as Lou Gehrig’s disease, named for the famous baseball player hit by the disease, it is estimated that roughly 4 in 100,000 people live with Amyotrophic Lateral Sclerosis (ALS). This new estimated is based on the first data summary released today by the Agency for Toxic Substances and Disease Registry.

The CDC issued a press release today which cited the report in its Morbidity and Mortality Weekly Report (MMWR). The report displays data from the National ALS Registry, the only known data that identifies all ALS cases among people living in the United States.

Sources for the data in the registry come from the national administrative databases and self-reports from people living with ALS and cover the period from Oct. 19, 2010 through Dec. 31, 2011.

Included in the data were:

•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).

Currently, there is still no cure for ALS, which causes the nerve cells throughout the body to stop working, leading to paralysis and usually death within two to five years of diagnosis. Physicist Stephen Hawking has also made the disease famous, and has not let the disease keep him from becoming one of the most respected scientists in his field. Hawking communicates with the aid of a computer and a software system that allows him to speak by converting his eye movements into speech.

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.