Every year, doctors inform more than 5,000 Americans that they have amyotrophic lateral sclerosis (ALS), a life-changing diagnosis. However, the total number of ALS cases in the United States remains difficult to estimate, and the causes of most cases are unknown. The U.S. National ALS Registry, managed by the Centers for Disease Control and Prevention (CDC), is working to change that through data collection and research. In honor of ALS Awareness Month, the registry is encouraging individuals with ALS to enroll and contribute to vital research.
ALS is a progressive neurodegenerative disease that affects nerve cells responsible for muscle movement. As these nerve cells stop working and die, the muscles become weak, leading to paralysis. The National ALS Registry, described by principal investigator Dr. Paul Mehta as “a program of, by and for those living with ALS,” collects, manages, and analyzes data from people with ALS across the country. Participants can voluntarily provide information and complete risk factor surveys to help build a comprehensive understanding of the disease.
The primary purpose of the registry is to gather data that can be used in the fight against ALS. This information helps estimate the number of new cases diagnosed each year, determine how many people have ALS at any given time, identify who gets ALS and what factors influence the disease, and enhance research aimed at improving care for those affected. Since 2010, the registry has funded over a dozen studies exploring potential risk factors for ALS, such as occupational history and environmental exposures.
Researchers use the data to track disease patterns over time and identify common risk factors among individuals with ALS. By participating, individuals with ALS can contribute to these efforts. Enrollment is open to anyone living with ALS, and participants are encouraged to complete up to 18 risk factor surveys, which help create a more complete picture of their ALS story. “By joining and taking the risk factor surveys, individuals living with ALS can help future generations,” the registry emphasizes.
To enroll or learn more, visit cdc.gov/als. The registry’s work is critical for advancing research and improving outcomes for people with ALS, a disease that currently has no cure.
