Saturday, January 15, 2011

Amyotrophic Lateral Sclerosis, (ATSDR) launches the National ALS Registry

from our good friend Paul Sutton

In a groundbreaking step to learn more about Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig's disease, the Agency for Toxic Substances and Disease Registry (ATSDR) has launched the National ALS Registry .

The registry is a national database that provides an opportunity to better understand one of the most common neuromuscular diseases worldwide, affecting people of all races and ethnic backgrounds - specially between the ages of 55 and 75.

The registry will gather and organize information about potential and known risk factors and symptoms of ALS. This information can help researchers evaluate shared risk factors common among patients, such as heredity or possible environmental exposures, and help estimate the number of ALS cases diagnosed each year.

ALS causes human nerve cells to stop functioning and eventually die. A diagnosis of the disease usually is followed by muscle weakness, paralysis, and eventually death. Scientists estimate 30,000 people in the United States have the disease.

Each entry in the registry includes a patient health history, work experiences, and family medical histories. Individual patient information in the registry will be confidential and will not be publicly released. Patients choosing to participate can visit to register.

For more information, visit . The ATSDR website is .

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