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Announcements: Amyotrophic Lateral Sclerosis (ALS) Awareness Month — May 2012

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 usually die within 2–5 years of diagnosis.

In October 2010, the Agency for Toxic Substances and Disease Registry (ATSDR) launched the National ALS Registry to collect, manage, and analyze data regarding persons with ALS. The registry uses information provided by registrants with ALS through a secure Internet portal and existing data from national databases, including the Centers for Medicare and Medicaid Services and the U.S. Department of Veterans Affairs. Through the Internet portal, registrants can participate in brief surveys to provide additional information about their illness and possible risk factors so that researchers can gain a better understanding of ALS.

ATSDR is collaborating with the ALS Association, Muscular Dystrophy Association, and other organizations to make all ALS patients and their families aware of the opportunity to register in the National ALS Registry. When sufficient data have been gathered to provide a representative picture of patients with ALS in the United States, ATSDR will begin analyzing the data and providing deidentified data to other researchers.

In addition, ATSDR is undertaking various initiatives to help strengthen the National ALS Registry. These include using selected state and metropolitan area surveillance activities to help evaluate the registry's completeness, funding a bioregistry feasibility study to link potential specimen data collected (e.g., blood, saliva, and tissue) with existing registry surveys, and developing a system to inform registrants about new research studies and clinical trials. Additional information regarding these initiatives and the National ALS Registry is available at http://www.cdc.gov/als.


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