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Detroit Amyotrophic Lateral Sclerosis (ALS) surveillance project summary
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9/8/15
[PDF-333.00 KB]
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Description:ALS, or Lou Gehrig’s disease, is a rare, difficult to diagnose neurological condition with no known cause or cure. Because ALS is a non-notifiable disease, little is known about its incidence and prevalence in the U.S. To help learn more about ALS, the federal Agency for Toxic Substances and Disease Registry (ATSDR) maintains the National ALS Registry (Registry).1,2 The Registry identifies ALS cases using national administrative databases, including those from Medicaid, Medicare, and the Veterans Health Administration and Veterans Benefits Administration, and by patient self-enrollment through a web portal. ATSDR funded McKing Consulting Corporation (McKing) to complete surveillance projects to gather reliable and timely data to describe the incidence and demographic characteristics of ALS and to assist ATSDR in evaluating the completeness of the Registry. Surveillance projects were conducted in three states (Florida, New Jersey, and Texas) and in eight metropolitan areas (Atlanta, Baltimore, Chicago, Detroit, Las Vegas, Los Angeles, Philadelphia, and San Francisco). This summary describes the Detroit project.
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