Every year, more than 5,000 Americans receive a diagnosis of amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease that leads to paralysis. Despite the prevalence, the exact number of cases in the United States remains unknown, and the causes are largely unclear. The U.S. National ALS Registry, a program of the Centers for Disease Control and Prevention (CDC), is working to change that by collecting data directly from people living with ALS.
During ALS Awareness Month, the registry is highlighting its mission and encouraging enrollment. "The National ALS Registry is a program of, by and for those living with ALS," said Dr. Paul Mehta, principal investigator of the Registry. "The program collects, manages and analyzes data about people with ALS in the United States. It includes data and information provided by individuals who choose to register and complete the risk factor surveys."
The registry's primary purpose is to gather information that can be used in the fight against ALS. Data collected helps estimate the number of new cases diagnosed each year and the total number of people living with the disease at any given time. It also aims to better understand who gets ALS and what factors affect the disease, ultimately enhancing research that could improve care for people with ALS.
Researchers use the data to look for patterns in the disease over time and identify common risk factors among those affected. Since 2010, the registry has funded more than a dozen studies exploring potential ALS risk factors, such as occupational history and environmental exposures. Participants are asked to complete up to 18 risk factor surveys, providing 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 states. Anyone living with ALS can enroll at cdc.gov/als. Participation is voluntary but critical for advancing research into this devastating disease.
