(Feature Impact) Every year, doctors tell more than 5,000 Americans they have amyotrophic lateral sclerosis, better known as ALS. It is a life-changing diagnosis.

Still, it’s hard to estimate the total number of ALS cases in the United States. No one knows what causes most cases of ALS, something the U.S. National ALS Registry is working to change.

In honor of ALS Awareness Month, learn more about the registry, how the information is used and how to enroll if you have ALS.

What is ALS?

ALS is a disease that affects the nerve cells that make muscles work in 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.

What is the registry?

“The National ALS Registry is a program of, by and for those living with ALS,” said Dr. Paul Mehta, principal investigator of the Registry. “The program collects, manages and analyzes data about people with ALS in the United States. It includes data and information provided by individuals who choose to register and complete the risk factor surveys.”

What is its purpose?

The main purpose is to gather information that can be used in the fight against ALS. The information is used to:

• Estimate the number of new cases of ALS diagnosed each year
• Estimate the number of people who have ALS at any given point in time
• Better understand who gets ALS and what factors affect the disease
• Enhance research that could improve care for people with ALS

How do researchers use the data?

Researchers can use the data to look for disease pattern changes over time and try to identify whether there are common risk factors among people with ALS. Since 2010, the registry has funded more than a dozen studies exploring potential ALS risk factors.

What does participation look like?

Individuals with ALS are encouraged to share their stories, enhancing ALS data and supporting research efforts. People living with ALS can help the National ALS Registry by completing up to 18 risk factor surveys, covering topics such as occupational history and environmental exposures, which help create a more complete picture of their ALS story.

How can someone join?

Anyone living with ALS can enroll. By joining and taking the risk factor surveys, individuals living with ALS can help future generations.

Get started at cdc.gov/als.

Source: National ALS Registry