The First National ALS Registry Report Summary
The National ALS Registry enables persons with ALS (also known as Lou Gehrig’s disease) to fight back. By signing up, being counted, and answering brief questions about your disease, you can help researchers find answers to critical questions.
Learn more at www.cy118119.com/als or (877) 442-9719
ALS (amyotrophic lateral sclerosis) is a disease of the nerves and muscles that gets worse over time. Most people die from ALS within 2 to 5 years of finding out they have it. No one knows what causes ALS and there is currently no cure.
In 2009, the federal Agency for Toxic Substances and Disease Registry (ATSDR) started the congressionally-mandated National ALS Registry to collect and analyze data on persons with ALS in the United States.
The Registry is helping to:
This is the first report to summarize data from the National ALS Registry, which is the only effort to identify all ALS cases among people living in the United States. The report provides information on how many people were living with ALS in the United States from October 19, 2010 through December 31, 2011. Additional annual reports are planned as we gather more data from the Registry.
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 surveyed.
Overall, ALS was more common among white males, non-Hispanics, and those ages 60 through 69. White men and women were twice as likely to have ALS than black men and women (3.8 per 100,000 compared to 1.9 per 100,000).
The age ranges with the lowest number of persons with ALS were age 18 through 39 and individuals age 80 or older.
Males had a higher rate of ALS than females across all sources.
Results from this first report are consistent with findings from well-established European ALS registries, along with small-scale epidemiologic studies that have previously been conducted in the United States.
Because ALS is not a reportable disease in the United States (except for Massachusetts), the Registry uses 2 ways to help identify all cases of ALS in the country. We use existing national administrative databases like Medicare, Medicaid, the Veterans Health Administration (VHA), and Veterans Benefits Administration (VBA) to identify cases.
We also use a secure web portal, launched on October 19, 2010, to identify cases that may not be included in the national administrative databases. ALS patients who have registered via the web portal can complete brief surveys that may lead to a better understanding of possible risk factors for ALS such as genetics, environmental, and occupational exposures.
ATSDR is working closely with ALS advocacy and support groups, researchers, and healthcare professionals, among others, to encourage those living with ALS to join the Registry and take risk factor surveys.
In addition to increasing the number of people with ALS signed up for the Registry, ATSDR is:
Adding new modules to the Registry web portal to study
other potential risk factors for the disease
Conducting a feasibility study for a new ALS Bioregistry to potentially provide biological samples (like hair and blood samples) from enrollees to help researchers learn more about the
disease
Engaging in surveillance activities in select states and large cities to
help test the completeness of the Registry
Using the Registry to recruit patient enrollees for new clinical trials and epidemiologic studies
More information about the National ALS Registry can be found online at www.cy118119.com/als or by calling us toll-free at (877) 442-9719. You can also learn more about the Registry through the local chapter of an ALS advocacy or support group:
- The ALS Association (www.alsa.org)
- The Muscular Dystrophy Association (www.mda.org)
- The Les Turner ALS Foundation (www.lesturnerals.org)
Be counted. Fight back. Make a difference.
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