National ALS Registry Seeks Participants to Boost Research

Every year, more than 5,000 Americans are diagnosed with amyotrophic lateral sclerosis, or ALS, a devastating disease that leads to paralysis. In honor of ALS Awareness Month, the U.S. National ALS Registry is highlighting its mission to collect critical data about ALS cases and risk factors. Dr. Paul Mehta, principal investigator of the Registry, describes it as "a program of, by and for those living with ALS." The Registry collects data from individuals who voluntarily enroll and complete risk factor surveys, covering topics like occupational history and environmental exposures. This information helps researchers estimate the number of new and existing ALS cases, understand who gets the disease, and identify potential risk factors. Since 2010, the Registry has funded over a dozen studies exploring ALS causes.

Participation is open to anyone living with ALS, who can complete up to 18 surveys to share their personal story and contribute to research. The ultimate goal is to enhance understanding and improve care for people with ALS. The Registry's data is used to look for disease pattern changes over time and identify common risk factors among patients. By joining, individuals can help future generations affected by this condition. To enroll, visit cdc.gov/als. The National ALS Registry is a vital tool in the fight against ALS, leveraging patient-reported data to drive research and awareness.

ALS affects nerve cells that control muscle movement, leading to weakness and paralysis. The Registry aims to fill knowledge gaps about the disease's causes and prevalence. By collecting comprehensive data, it supports research that could lead to better treatments and ultimately a cure. For more information, contact Sarah Fowler at Sarah.Fowler@featureimpact.com or 913-647-0938.