Every year, more than 5,000 Americans receive a diagnosis of amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease that leads to muscle weakness and paralysis. Despite its devastating impact, the exact 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, a program managed by the Centers for Disease Control and Prevention (CDC), aims to change that by collecting and analyzing data from people living with ALS.
In honor of ALS Awareness Month, the registry is encouraging individuals with ALS to enroll and contribute to research that could unlock critical insights into the disease. According to Dr. Paul Mehta, principal investigator of the Registry, the program is designed to be "of, by and for those living with ALS." It collects, manages, and analyzes data provided by individuals who choose to register and complete risk factor surveys.
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 affect the disease, and enhancing research that could improve care for those affected. Since its inception in 2010, the registry has funded more than a dozen studies exploring potential risk factors for ALS, such as occupational history and environmental exposures.
Researchers use the data to look for patterns in the disease over time and to identify common risk factors among people with ALS. By participating, individuals with ALS can contribute to a more complete picture of the disease, potentially leading to better treatments and prevention strategies. The registry offers up to 18 risk factor surveys that participants can complete, covering topics that help tell their unique ALS story.
Anyone living with ALS is eligible to enroll. By joining and completing the surveys, individuals can help future generations by providing valuable data that advances scientific understanding. To learn more and register, visit cdc.gov/als.
