Every year, more than 5,000 Americans are diagnosed with amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease that affects nerve cells controlling muscle movement. Despite its prevalence, the exact number of ALS cases in the U.S. 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 participate in its efforts during ALS Awareness Month.
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. Participants can voluntarily enroll and complete up to 18 risk factor surveys covering topics such as occupational history and environmental exposures. This information helps researchers estimate the number of new cases each year, understand who gets ALS and what factors may influence the disease, and enhance research aimed at improving care.
Since 2010, the registry has funded more than a dozen studies exploring potential ALS risk factors. Researchers use the data to track changes in disease patterns over time and identify common risk factors among patients. By sharing their stories and completing surveys, individuals with ALS contribute to a more comprehensive understanding of the disease, which could lead to better treatments and, ultimately, a cure.
Anyone living with ALS can enroll in the registry. To get started, visit cdc.gov/als. Participation is free and confidential, and the data collected are used solely for research purposes.
For more information, contact Sarah Fowler at 913-647-0938 or Sarah.Fowler@featureimpact.com.
