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 life-changing impact, 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, 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 raising awareness about 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. This data helps estimate the number of new cases diagnosed each year, the total number of people living with ALS at any given time, and better understand who gets ALS and what factors affect the disease. Ultimately, the information enhances research that could improve care for people with ALS.
Researchers use the data to look for changes in disease patterns over time and identify common risk factors among people with ALS. Since 2010, the registry has funded more than a dozen studies exploring potential ALS risk factors, such as occupational history and environmental exposures. By completing up to 18 risk factor surveys, individuals with ALS can help create a more complete picture of their condition and contribute to scientific knowledge.
Anyone living with ALS can enroll in the registry. Participation involves sharing personal stories and data, which supports research efforts and helps future generations. To get started, visit cdc.gov/als.
