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National ALS Registry Makes a Difference

Kathryn VoitMay is ALS Awareness Month. The National ALS Registry is working to ensure people with ALS get counted. We are also seeking to better understand the risk factors, such as environmental and occupational, that affect the disease. Find out how.

Amyotrophic lateral sclerosis (ALS) is a fatal neurological disease that attacks the nerve cells. It first gained the national spotlight as Lou Gehrig's disease, named after the famous baseball player who retired in 1939 because of it. ALS usually leads to death within 2–5 years of diagnosis. No one knows what causes ALS—and there is still no cure.

The National ALS Registry determined that over 12,000 people were living with ALS during its first reporting period, October 19, 2010 through December 31, 2011. This represents approximately 4 persons in every 100,000 people. Learn more about the Registry findings [575 KB].

Launched in 2010 as a mandate from Congress, the National ALS Registry collects and analyzes data on persons with ALS in the U.S. The ALS Registry remains the only effort to identify ALS cases nationwide among people living with the disease.

Walter G. Bradley, MD

The Registry is also helping those with this disease learn about new research – research that may lead to a future without ALS. And, with promising breakthroughs in ALS treatment funded in part by the Ice Bucket Challenge, it's never been a better time for persons with ALS (PALS) to connect and learn about ALS-related clinical trials and research studies. Many people do not realize that the National ALS Registry doesn't just track prevalence of the disease, but it also connects people to research.

Connecting People with ALS to Research

Persons with ALS who have registered on the web portal may choose to complete brief surveys that help researchers understand possible risk factors for the disease, such as genetics, environmental and occupational exposures. They also can choose to be alerted about research studies and clinical trials and have the option to contact the researchers to find out more. Approximately 95% of PALS enrolled in the Registry choose to be notified about studies and clinical trials. These researchers and scientists are on the front lines of investigating the causes of the disease, identifying new treatment options, and ultimately, preventing people from ever getting it.

To date, the Registry has supported 21 research studies and clinical trials from researchers domestic and abroad and has sent over 70,000 emails to PALS to inform them about the studies and clinical trials.

Walter G. Bradley, MD, FRCP, Professor and Chairman Emeritus, Department of Neurology, at the University of Miami, School of Medicine, who has investigated ALS since 1969, is one such researcher. "The Registry is unique compared with registries around the world – no others have been governmentally funded," says Bradley, noting that papers produced from National ALS Registry data showing the frequency of ALS in the country have been excellent. Bradley says the Registry is working to create a National ALS Biorepository to collect specimens from ALS patients that "will be useful for research in many different fields."

He credits the National ALS Registry with providing resources to support his study of environmental risk factors for ALS in three states – New Hampshire, Vermont and Florida. Dr. Bradley is currently working with Dr. Elijah Stommel on this study. Dr. Stommel is a renowned ALS researcher and professor of neurology from Dartmouth College.

"This research doesn't deal with the treatment of ALS for patients who have the disease but if we can find out what increases the risk of getting ALS then we've got a chance of mitigating and preventing it," he says.

Learn more about the Registry through the local chapter of an ALS advocacy or support group, such as the ALS Association, the Muscular Dystrophy Association, and the Les Turner ALS Foundation.
No accurate picture exists showing who has ALS. But the more people living with ALS participate in this Registry, the more accurate the picture will become.

Learn more about the National ALS Registry today!

  • Page last reviewed: May 2, 2016
  • Page last updated: May 2, 2016
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