Every year, more than 5,000 Americans receive a diagnosis of amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease that leads to paralysis. Despite its impact, the exact number of ALS cases in the United States remains uncertain, and the causes of most cases are unknown. The U.S. National ALS Registry, established to address these gaps, is urging individuals living with ALS to enroll and participate in risk factor surveys to accelerate research and improve understanding of the disease.
ALS affects nerve cells that control muscle movement, causing them to stop working and die. As these nerves lose function, muscles weaken and eventually become paralyzed. The 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. It relies on voluntary participation from individuals who choose to register and complete surveys on potential risk factors.
The primary purpose of the Registry is to gather information that can be used in the fight against ALS. This includes estimating the number of new cases diagnosed each year, determining how many people have ALS at any given time, understanding who gets ALS and what factors influence the disease, and enhancing research to improve care. Since 2010, the Registry has funded over a dozen studies exploring potential risk factors, such as occupational history and environmental exposures.
Researchers use the data to track changes in disease patterns over time and identify common risk factors among individuals with ALS. By completing up to 18 risk factor surveys, enrollees help create a more complete picture of their ALS story, contributing to a growing body of evidence that could lead to breakthroughs. Anyone living with ALS can enroll at cdc.gov/als and take the surveys to support future generations.
The Registry's work is especially critical during ALS Awareness Month, highlighting the importance of participation in advancing research. With no known cure and limited treatment options, every piece of data collected brings researchers closer to understanding the disease's origins and developing effective interventions.
