Abstract
Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease, is a progressive and fatal neuromuscular disease; the majority of ALS patients die within 2-5 years of receiving a diagnosis (1). Familial ALS, a hereditary form of the disease, accounts for 5%-10% of cases, whereas the remaining cases have no clearly defined etiology (1). ALS affects persons of all races and ethnicities; however, whites, males, non-Hispanics, persons aged ≥60 years, and those with a family history of ALS are more likely to develop the disease (2). No cure for ALS has yet been identified, and the lack of proven and effective therapeutic interventions is an ongoing challenge. Treatments currently available, Edaravone and Riluzole, do not cure ALS, but slow disease progression in certain patients (3,4). This report presents National ALS Registry findings regarding ALS prevalence in the United States for the period January 1-December 31, 2015. In 2015, the estimated prevalence of ALS cases was 5.2 per 100,000 population with a total of 16,583 cases identified. Overall, these findings are similar to the 2014 ALS prevalence and case count (5.0 per 100,000; 15,927 cases) (2). Prevalence rates by patient characteristics (most common in whites, males, and persons aged ≥60 years) and U.S. Census regions are consistent with ALS demographics and have not changed from 2014 to 2015 calendar years. The algorithm used to identify cases from national administrative databases was updated from the International Classification of Diseases, Ninth Revision (ICD-9) to the ICD-10 codes for claims starting on October 1, 2015, with no apparent effect on case ascertainment. Data collected by the National ALS Registry are being used to better describe the epidemiology of ALS in the United States and to facilitate research on the genetics, potential biomarkers, environmental pollutants, and etiology for ALS.
Highlights
DiscussionData sources for the Registry remain unchanged; the implementation of ICD-10 on October 1, 2015 required that ICD-10 codes be integrated into the validated algorithm without any apparent effect on case ascertainment
The intent of the Biorepository is to collect specimens from at least one person per state. These de-identified samples can be paired with completed risk factor survey data from the Registry
Additional information for requesting samples and/or risk factor data is available at https:// wwwn.cdc.gov/als/ALSRegistryResearchApplicationInfo.aspx
Summary
Data sources for the Registry remain unchanged; the implementation of ICD-10 on October 1, 2015 required that ICD-10 codes be integrated into the validated algorithm without any apparent effect on case ascertainment. The Registry’s approach of using national administrative databases is the cornerstone in identifying ALS cases because most of the definite ALS cases from 2010 to 2015 originate from these sources. ALS has remained more prevalent in whites, males, and persons aged ≥60 years; current patterns are similar to those identified from 2010 to 2014 [2,3,4]. The MMWR series of publications is published by the Center for Surveillance, Epidemiology, and Laboratory Services, Centers for Disease Control and Prevention (CDC), U.S Department of Health and Human Services, Atlanta, GA 30329-4027.
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