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Health Agencies Update
November 24, 2010

ALS Registry

JAMA. 2010;304(20):2232. doi:10.1001/jama.2010.1682

A national registry is being established to collect information about individuals with amyotrophic lateral sclerosis (ALS). The registry is being created by the US Department of Health and Human Services' Agency for Toxic Substances and Disease Registry.

ALS, also known as Lou Gehrig disease, is a progressive neurological disease that is usually fatal within 3 to 6 years after the onset of symptoms. In those affected, the nerve cells that control voluntary muscle movements deteriorate, causing loss of the ability to move certain muscles, leading to atrophy in affected muscle tissue. About 5% to 10% of the cases result from inherited genetic mutations, but most cases of the disorder have no apparent cause. Some epidemiological studies have suggested exposure to pesticides and other toxins may increase the risk of ALS.

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