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Announcements: Amyotrophic Lateral Sclerosis (ALS) Awareness Month --- May 2011
May is Amyotrophic Lateral Sclerosis (ALS) Awareness Month. ALS, also known as Lou Gehrig's disease, is a progressive, fatal, neurodegenerative disorder of the upper and lower motor neurons. Persons with ALS (PALS) usually die within 2--5 years of diagnosis.
In 2008, the National ALS Registry Act was signed into law, allowing for creation of a national ALS registry to better understand the incidence, prevalence, and potential risk factors for ALS. In October 2010, the Agency for Toxic Substances and Disease Registry (ATSDR) launched the National ALS Registry to collect, manage, and analyze data about PALS. This registry uses data from national databases, including those maintained by the Centers for Medicare and Medicaid Services and the Department of Veterans Affairs, and information provided by participating PALS through a secure web portal. The web portal also contains brief risk-factor surveys that allow PALS to provide additional information about their illness to help researchers gain a better understanding of who gets ALS.
Approximately 16,000 PALS were identified in the national databases for persons receiving care at any time during 2001--2005. Since October 2010, PALS from all 50 states, Puerto Rico, and the U.S. Virgin Islands have registered in the National ALS Registry. When sufficient data have been gathered from the secure web portal and merged with the national databases to provide a representative picture of PALS in the United States, ATSDR will make summary data and de-identified datasets available to interested scientists and researchers. ATSDR also is collaborating with the ALS Association (ALSA), Muscular Dystrophy Association ALS Division, and other organizations to make all PALS aware of the self-registration portion of the National ALS Registry. Health-care professionals who interact with PALS also are encouraged to visit the web portal at http://www.cdc.gov/als to learn more and educate their patients about the National ALS Registry.
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