ATSDR Launches National ALS Registry

In a groundbreaking step to learn more about Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig's disease, the federal 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 – especially between the ages of 55 and 75.

The registry will gather and organize information about potential and known risk factors and symptoms of ALS. The 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.

"A National ALS Registry provides researchers and physicians with more thorough information about ALS that will further empower them in the fight to treat and possibly prevent this disease," said Christopher Portier, Ph.D., director of ATSDR. "Today, the cause or causes of ALS are largely unknown; this is the first nation-wide registry created to enhance our knowledge about this disease."

ALS causes human nerve cells to stop functioning and eventually die. A diagnosis of the disease leads to muscle weakness, paralysis, and eventually death. No one knows how many people are living with ALS, though 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 on the registry will be confidential and will not be publicly released. Patients choosing to participate can visit www.cdc.gov/als to register.

"The more people participate in the registry, the more comprehensive and diverse the data will be to help researchers and physicians better understand this disease," said Kevin Horton, Dr.P.H., ATSDR's ALS program administrator. "In addition, the registry provides a means to share information about research findings and clinical trials."

For more information, visit www.cdc.gov/als. The ATSDR website is www.atsdr.cdc.gov.

Editor's Note: The Agency for Toxic Substance and Disease Registry, ATSDR, is a federal public health agency of the U.S. Department of Health and Human Services. Its mission is to prevent harmful exposures and diseases related to toxic substances. It is commonly referred to as CDC's sister agency.

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U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES