Contact:
Carrie Munk
The ALS Association
571-319-3047
cmunk@alsa-national.org

 

FOR IMMEDIATE RELEASE

ATSDR Reports First Data Set from the National ALS Registry

Washington, D.C. (July 24, 2014) — Today, the Agency for Toxic Substances and Disease Registry (ATSDR), a sister agency to the U.S. Centers for Disease Control and Prevention (CDC), reported the first data set from the National ALS Registry, a nationwide research project established by Congress to identify cases of amyotrophic lateral sclerosis (ALS) from throughout the United States and collect vital information leading to the cause, treatment and cure of this fatal neurodegenerative disease.

The report was published in the CDC’s Morbidity and Mortality Weekly Report and includes information collected through national administrative databases (Medicare, Medicaid, Veterans Administration) and from self-reporting by people with ALS. Among the report’s findings:

  • Between October 19, 2010 and December 31, 2011, the ALS Registry identified 12,187 people living with ALS in the United States, which means about 4 people out of every 100,000 live with ALS;
  • The disease was more common among males, whites, non-Hispanics, and people aged 60 - 69;
  • White men and women are about twice as likely to develop the disease as black men and women; and
  • The disease is more common in men than women, with a ratio of men to women of 1.56.
  • The report represents the first ever population based estimate of the number of people living with ALS in the United States and included information collected during the ALS Registry’s first year of operation, from 2010 - 2011. 

“This initial report is an important milestone for the National ALS Registry and adds to our knowledge of the disease,” said Barbara Newhouse, President and CEO of The ALS Association. “But this is just the beginning; the first step in what is a long-term research project that not only can tell us how many people have ALS, but more importantly, why they have it.  Further enrollment of people living with ALS is critical.”

In addition to identifying the number of cases of ALS throughout the United States, today’s report included preliminary information about risk factor data collected by the registry, including military service, the occupations of those living with ALS as well as smoking and alcohol consumption.  The ATSDR is expected to report their findings once analysis is complete, and this information may help the scientific community learn more about what causes ALS.

The report also noted enhancements that have been made to the ALS Registry, including the creation of a research notification tool to inform people with ALS about research studies in which they may be eligible to participate as well as a feasibility study investigating the creation of a national ALS biorepository.   

“A national biorepository that collects tissue samples from registry participants and links those samples to data already collected by the registry would provide the scientific community a powerful new resource to advance research,” said Lucie Bruijn, Ph.D., MBA, Chief Scientist for The ALS Association.  “Whether it’s the biorepository, the risk factor surveys, or the research notification tool, the registry holds great promise, and we can realize that promise if people with ALS continue to enroll.”   

The ALS Association is working closely with ATSDR and other ALS organizations to raise awareness of the National ALS Registry in communities across the U.S. and to help people with ALS enroll in the registry. To learn more about the National ALS Registry, including how to enroll, please visit the registry page of The ALS Association’s website, http://registry.alsa.org/ or the ATSDR’s ALS Registry website at www.cdc.gov/als. 

ATSDR’s full report is available here: http://www.cdc.gov/mmwr/pdf/ss/ss6307.pdf

About The ALS Association

The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front.  By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.  For more information about The ALS Association, visit our website at www.alsa.org.

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