In a groundbreaking step to learn more about Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, CDC’s sister agency the Agency for Toxic Substances and Disease Registry (ATSDR) has launched the National ALS Registry.
ALS is one of the most common neuromuscular diseases worldwide, affecting people of all races and ethnic backgrounds especially between the ages of 55 to 75 and the disease causes human nerve cells to stop functioning and eventually die. A diagnosis of the disease leads to muscle weakness, paralysis, and eventually death. No one really knows how many people are living with ALS, although scientists estimate 30,000 people in the U.S. alone have the disease.
The registry is able to gather and organize information about potential and known risk factors and symptoms for ALS patients. The information can help researchers evaluate shared risk factors common to patients, such as heredity issues, or possible environmental exposures, and the data will help to estimate the number of ALS cases diagnosed each year. Each entry in the registry includes the patient’s health history, work experiences, and family medical histories with individual patient information kept confidential.
“The more people participate in the registry, the more comprehensive and diverse the data will be to help researchers and physicians better understand the disease”, said Dr. Kevin Horton, ALS Program Administrator. “In addition, the registry provides a means to share information about research findings and clinical trials.”
The registry is available at www.cdc.gov/als.