MMWR supplements
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Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease, is a progressive and fatal neuromuscular disease for which no cure has been identified. Although ALS has no known definitive cause, familial ALS (a hereditary form) occurs in 5%-10% of cases. Many hypotheses have been formulated about what causes ALS, including chemical exposures, occupational exposure, military service, infectious agents, nutritional intake, physical activity, and trauma. Worldwide, ALS affects white males aged >60 years more often than any other group. In the United States, ALS surveillance is necessary to estimate the incidence and prevalence of ALS and collect data on risk factors. ALS is not a nationally notifiable condition in the United States (i.e., it is not a reportable condition in all jurisdictions), and individual state reporting requirements differ, with Massachusetts being the only state that mandates reporting. ⋯ Data collected by the National ALS Registry are being used to better describe the prevalence of ALS in the United States and to help facilitate research. The combined approach of using national administrative databases and a self-enrollment web portal to collect data is novel and potentially could be used for other non-notifiable diseases such as Parkinson's disease or multiple sclerosis. ATSDR is working closely with ALS advocacy and support groups, researchers, health-care professionals, and others to promote the National ALS Registry in order to capture all cases of ALS. To further enhance and strengthen the Registry, ATSDR is 1) adding new modules to the portal to examine other potential risk factors, 2) launching a feasibility study for a novel ALS biorepository (available at http://wwwn.cdc.gov/als/ALSBioRegistry.aspx) linked to the Registry that would potentially provide biologic specimens from patient enrollees to help researchers learn more about disease etiology, 3) engaging in surveillance activities in selected states and large metropolitan areas to help test the completeness of the Registry as well as calculating incidence in these areas, and 4) using the Registry to recruit patient enrollees for new clinical trials and epidemiologic studies. Additional information about the National ALS Registry is available at http://www.cdc.gov/als or by calling toll-free at 1-877-442-9719.