Every year, more than 5,000 Americans are diagnosed with amyotrophic lateral sclerosis (ALS), a life-changing disease that affects nerve cells controlling muscle movement. Despite its impact, the total number of ALS cases in the United States remains uncertain, and the causes of most cases are unknown. The U.S. National ALS Registry, a program by the Centers for Disease Control and Prevention (CDC), aims to change this by collecting and analyzing data from people living with ALS.
In honor of ALS Awareness Month, the registry is highlighting its mission and calling on individuals with ALS to participate. Dr. Paul Mehta, principal investigator of the registry, emphasized that it is 'a program of, by and for those living with ALS.' Participants can complete up to 18 risk factor surveys covering topics such as occupational history and environmental exposures, which help create a comprehensive picture of their ALS story.
The registry's primary purpose is to gather information that can be used to estimate the number of new ALS cases each year, understand who gets ALS and what factors affect the disease, and enhance research to improve care. Researchers use the data to identify disease pattern changes over time and explore potential risk factors. Since 2010, the registry has funded over a dozen studies examining possible ALS risk factors.
Anyone living with ALS can enroll in the registry and contribute to research that may benefit future generations. To learn more or register, visit cdc.gov/als. Participation is a critical step in advancing the fight against ALS and improving outcomes for those affected by this devastating disease.
