The U.S. National ALS Registry, a program designed to collect and analyze data from people living with amyotrophic lateral sclerosis (ALS), is calling on individuals with the disease to enroll and participate in risk factor surveys. The initiative aims to better understand who gets ALS and what factors may contribute to the disease, ultimately supporting research that could improve care and lead to a cure.
ALS, also known as Lou Gehrig's disease, affects nerve cells in the brain and spinal cord that control voluntary muscle movement. As these motor neurons degenerate, they lose the ability to trigger specific muscles, leading to muscle weakness, paralysis, and eventually respiratory failure. Each year, more than 5,000 Americans receive an ALS diagnosis, yet the total number of cases in the U.S. is difficult to estimate because no comprehensive surveillance system existed before the registry.
Established in 2010, the National ALS Registry is a program of, by, and for those living with ALS, according to Dr. Paul Mehta, principal investigator of the Registry. The registry collects, manages, and analyzes data about people with ALS in the United States, including information provided by individuals who choose to register and complete risk factor surveys. The data help researchers estimate the number of new cases each year, determine how many people have ALS at any given time, and identify common risk factors and disease patterns.
Since its inception, the registry has funded more than a dozen studies exploring potential ALS risk factors. Researchers use the data to look for changes in disease patterns over time and to identify whether environmental exposures, occupational history, or other factors are linked to ALS. Participants can complete 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.
“The National ALS Registry is a program of, by and for those living with ALS,” said Dr. Mehta. “The program collects, manages and analyzes data about people with ALS in the United States.”
Anyone living with ALS can enroll in the registry by visiting cdc.gov/als. By joining and completing the risk factor surveys, individuals can contribute to research that may benefit future generations and help in the fight against ALS.
