Many people know Amyotrophic Lateral Sclerosis (ALS) as Lou Gehrig’s disease, named after the famous baseball player who got the illness and had to retire in 1939 because of it. ALS is a disease that affects the nerve cells, called motor neurons, which make muscles work in both the upper and lower parts of the body. This disease makes the nerve cells stop working and die. The nerves lose the ability to trigger specific muscles, which causes the muscles to become weak and leads to paralysis.

No one knows what causes most cases of ALS. Scientists have been studying many factors that could be linked with ALS, such as heredity and environmental exposures. Other scientists have looked at diet or injury. No cause has been found for most cases of ALS. In the future, scientists may find that many factors together cause ALS.

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A registry is a system that collects, manages, and analyzes information about people. Registries usually focus on a specific disease or exposure. The information in a registry can be used for many things. It can be used to look at changes in a disease over time, describe who has the disease, find patterns in different groups of people, and improve research. A registry also can give valuable information about a disease to patients, family members, and health-care professionals.

In October 2008, President Bush signed a law that provides for a national ALS registry to be created. The law stated that the first step was to see if creating a registry was possible. The Agency for Toxic Substances and Disease Registry (ATSDR) conducted projects with several partners and tested ways for creating the registry. ATSDR and a team of experts decided that creating a national ALS registry was possible based on the test projects, and ATSDR is moving forward with the registry. The registry will use existing information on people with ALS. It will also allow ALS patients to register themselves.

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