National ALS Registry Makes a Difference | Features | CDC

National ALS Registry Makes a Difference | Features | CDC

National ALS Registry Makes a Difference

The ATSDR National ALS Registry contributes to a better understanding of ALS and helps create a better future for the next generation of persons living with ALS. Learn more about ALS and the ALS Registry. If you have ALS, make a difference in ALS research by participating in the ALS Registry. Learn how at the secure website.

Before the summer of 2014, you rarely saw videos of people dumping buckets of ice water on their heads. But last year, this became a national phenomenon as people across the United States (and elsewhere around the world) participated in the now-famous ALS Ice Bucket challenge. People with the disease, celebrities, politicians, even Homer Simpson and Kermit the Frog accepted the dare to dump freezing water on their heads to raise funds and awareness for ALS.

Not since Lou Gehrig made his famous "Luckiest Man on Earth" speech in 1939 has so much public attention been focused on ALS. That was the year that the beloved New York Yankees baseball player was diagnosed with ALS. Since then ALS has also been known as "Lou Gehrig's disease."

What is ALS?

Amyotrophic lateral sclerosis, or ALS, is a progressive neuromuscular disease that usually leads to death within 2–5 years of diagnosis. Seventy six years have passed since Lou Gehrig was diagnosed and still no one knows what causes ALS—and there is still no cure.

How ATSDR is Fighting ALS

In 2009, the federal Agency for Toxic Substances and Disease Registry (ATSDR), as mandated by Congress, started the National ALS Registry to collect and analyze data on persons with ALS in the U.S.

The goal of the Registry is to learn more about who gets ALS and to understand the possible causes of ALS. Medical researchers can use the Registry to determine the number of people living with ALS and better understand how the disease affects patients. The Registry also provides information gathered from people with ALS to examine the possible risk factors for the disease.

Because ALS is not a reportable disease in the United States (except for Massachusetts), the Registry uses two approaches to help identify all cases of ALS in the country. Registry staff use existing national databases like Medicare, Medicaid, the Veterans Health Administration (VHA) and Veterans Benefits Administration (VBA) to identify cases.

The National ALS Registry also uses a secure web portal, launched on October 19, 2010, to identify cases that may not be included in the national administrative databases. Persons with ALS (PALS) who have registered on the web portal may complete brief surveys that may help researchers understand possible risk factors for the disease, such as genetics and environmental and occupational exposures. Find out how to sign up for the Registry.

This is the only effort to identify ALS cases nationwide among people living with ALS in the U.S.

MMWR published the first report providing information on the prevalence of ALS from October 19, 2010-December 31, 2011.

The first report to summarize data from the National ALS Registry was released in the Morbidity and Mortality Weekly Report[575 KB] on July 25, 2014. The report provides information on how many people were living with ALS in the U.S. from October 19, 2010 – December 31, 2011.

• A total of 12,187 people were identified with ALS from October 19, 2010, through December 31, 2011. This means that about 4 in 100,000 people were diagnosed with ALS (based upon 2011 census data) during the period covered.
• Overall, ALS was more common among Whites, males, non-Hispanics, and those in the 60–69 age range. The age ranges with the lowest number of persons with ALS were 18–39 years of age and individuals 80 years of age or older.
• Males had a higher rate of ALS than females across all sources.

ATSDR also funded state and metropolitan area-based surveillance projects to evaluate the completeness of the National ALS Registry. Three states (Florida, New Jersey, and Texas) and 8 metropolitan areas (Atlanta, Baltimore, Chicago, Detroit, Las Vegas, Los Angeles, Philadelphia, and San Francisco) have taken part in these projects. You can find the ALS findings from each of these states and metropolitan areas cities here.

The National ALS Registry also provides funding to support ALS research to increase the understanding of ALS.Learn more about research supported by the Registry.

People with ALS often need to use a motorized wheelchair as ALS progresses.

Why should people with ALS register in the portal?

People living with ALS can play a valuable role in helping researchers learn more about the disease by making more information available to them. More data not only leads to a better understanding of ALS, but also helps create a better future for persons with ALS.

ATSDR also has been conducting a National ALS Biorepository Pilot Study to evaluate the feasibility of collecting biospecimens (blood, hair, nails, tissue, etc.) from people around the United States who have enrolled in the Registry. The study will be completed in September 2015. Connecting biospecimens to information already collected from enrollees will make the Registry even more useful to researchers.

The Registry can also benefit people with ALS now. During the enrollment process, PALS can choose to be notified about clinical trials and epidemiological studies. Registry enrollees will receive emails about new research studies and clinical trials that are recruiting participants. To date, over 40,000 notifications about clinical trials and studies have been emailed to Registry enrollees who are eligible to participate. Visit ALS Research Notification to learn more about connecting PALS with researchers.

More information about the National ALS Registry can be found online or by calling toll-free at 1-877-442-9719. You can also 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.