Fourth Anniversary of the National ALS Registry

It’s been an incredible year for Amyotrophic Lateral Sclerosis (ALS) awareness! Not since Lou Gehrig made his famous “Luckiest Man on Earth” speech in 1939 has so much public attention been focused on ALS. Learn how the National ALS Registry is helping scientists learn more about this mysterious disease.

The ALS Ice Bucket Challenge

During the summer of 2014, the ALS Ice Bucket Challenge swept the U.S. and beyond, bringing attention to the disease and raising money for research. Maybe you were one of thousands, including people with the disease, celebrities, politicians, and even Homer Simpson and Kermit the Frog, who dumped an icy cold bucket of water on your head for a good cause.

What is ALS?

ALS, also known as Lou Gehrig’s disease, is a rapidly progressive, fatal neurological disease that affects nerve cells in the brain and spinal cord, causing muscle nerves to die and affecting voluntary muscle movement. On average, persons with the disease die within two to five years after being diagnosed.

What is the ALS Registry?

We still know little about ALS, including its cause(s), why ALS strikes some people and not others, and how to stop it. The federal Agency for Toxic Substances and Disease Registry (ATSDR) is working to learn more through its National ALS Registry. The Registry, launched in October 2010, gathers data about ALS from people who have the disease and from existing national health databases (Medicare, Medicaid, and the Veterans Administration).

This year, the National ALS Registry released the first-ever prevalence estimates for ALS in the United States. From October 19, 2010–December 31, 2011, the Registry identified 12,187 persons with ALS, meaning about four cases per 100,000 people in the general population of the United States. You can find more statistical information when you read the full report here [575 KB]. ATSDR will continue to release further such reports annually.

Registry Enhancements

Currently, ATSDR is implementing new enhancements to the Registry for both patients and researchers, including six new risk factor modules in the Registry, state and metropolitan area-based ALS surveillance, a research notification system, a biorepository study, and mobile apps available on Apple and Android platforms.

For more details, read the full CDC feature on the National ALS Registry Anniversary.