Conference Coverage

ALS Incidence Varies by Race and Ethnicity



PHILADELPHIA—Caucasians have the highest incidence of amyotrophic lateral sclerosis (ALS), according to data presented at the 66th Annual Meeting of the American Academy of Neurology. The incidence of ALS is 1.80 per 100,000 person years among Caucasians, 0.80 among African Americans, 0.76 among Asians, and 0.58 among Hispanics. These data are consistent with previously published reports, said Lindsay Rechtman.

To characterize racial and ethnic differences between patients with ALS, Ms. Rechtman, a researcher with McKing Consulting in Atlanta, and colleagues examined data from active case surveillance activities from three states (ie, Florida, New Jersey, and Texas) and eight metropolitan areas (ie, Atlanta, Baltimore, Chicago, Detroit, Las Vegas, Los Angeles, Philadelphia, and San Francisco). These activities were initiated as part of the National ALS Registry to determine how ALS affects various subpopulations of Americans.

Lindsay Rechtman

Minorities Were Overrepresented in the Study Population
The states and the metropolitan areas in the survey represent 17.1% and 10.0% of the US population, respectively. The population in these 11 areas was 64.4% Caucasian, 16.0% African American, and 6.7% Asian. Approximately 28% of the sample was Hispanic. Asians, African Americans, and Hispanics were overrepresented in the study population, compared with their proportion of the general US population.

Neurologists submitted 5,914 case reports between January 1, 2009, and December 31, 2011. Approximately 75% of cases were Caucasian, 9.3% were African American, 3.6% were Asian, and 12% were of unknown race. About 11% of cases were Hispanic, 77% were non-Hispanic, and 12% were of unknown ethnicity. Patients were more likely to be male than female.

Asians Had Longest Time From Onset to Diagnosis
Patients who were Caucasian, Asian, other race, or unknown race were more likely to be between ages 60 and 69 at diagnosis. In contrast, African Americans were more likely to be between ages 50 and 59 at diagnosis. Hispanics were more likely to be diagnosed between ages 50 and 69 (median age, 58), and non-Hispanics were more likely to be diagnosed between ages 60 and 69 (median age, 62).

Caucasians were more likely to be classified as having definite or probable ALS according to the El Escorial criteria, compared with African Americans and Asians. Asians were the most likely to have a diagnosis of possible ALS.

The mean duration of time from symptom onset to diagnosis was 16.8 months. The shortest mean time, 15.6 months, occurred among African Americans. The longest mean time, 20.4 months, occurred among Asians. The median time from symptom onset to diagnosis was 11 months for Caucasians, African Americans, and non-Hispanics. Hispanics and Asians had a median time from symptom onset to diagnosis of 12 months.

Asians were the least likely (52.8%) to use a federal payer, including Medicare, Medicaid, and the Veterans Administration. Approximately 62% of Caucasians and 63% of African Americans used a federal payer.

A larger percentage of Hispanics than non-Hispanics had no federal payer (44.2% vs 35.0%). More than one-third of all cases had no federal payer and “might not be captured in the federal datasets,” said Ms. Rechtman.

Erik Greb

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