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Announcements: National Amyotrophic Lateral Sclerosis (ALS) Registry Available Online
On October 19, 2010, the Agency for Toxic Substance and Disease Registry (ATSDR) launched the National Amyotrophic Lateral Sclerosis (ALS) Registry web portal. ALS, commonly known as Lou Gehrig's disease, is a fatal neurodegenerative disease. The registry provides a means of structured data collection that will help address uncertainty about the incidence and prevalence of ALS in the United States. The registry gathers patient information from existing electronic records (i.e., records from the Centers for Medicare & Medicaid Services and the U.S. Department of Veterans Affairs) as well as from patients who enter information directly into the web portal. The data also might provide insight into the role of the environment in the etiology of ALS. The purpose of the ALS Registry is to 1) better describe the incidence and prevalence of ALS in the United States; 2) examine factors, such as environmental and occupational exposures, that might be associated with the disease; 3) better outline key demographic factors (e.g., age, race/ethnicity, sex, and family history) associated with the disease; and 4) facilitate examination of the connection between ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases, progress to ALS.
The National ALS Registry web portal allows ALS patients to register and take online surveys about potential risk factors. ATSDR is encouraging all patients living with ALS to join the registry to help scientists learn more about the disease. In addition, clinicians can create an account to access continuing education modules. The National ALS Registry web portal is available at http://www.cdc.gov/als.
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