Racial and Ethnic Differences across Amyotrophic Lateral Sclerosis (ALS) Cases from Three State and Eight Metropolitan Area Surveillance Projects (P7.101)

Abstract

OBJECTIVE: To characterize the racial and ethnic differences across Amyotrophic Lateral Sclerosis (ALS) cases collected in three state-based and eight metropolitan-area-based ALS Surveillance Projects. BACKGROUND: The median crude incidence of ALS is estimated to be 1.6 per 100,000 person-years (range 0.7 to 2.5), and rates are higher among those who are older, male, non-Hispanic and white. Few studies discuss differences by racial and ethnic characteristics of those with ALS. The Agency for Toxic Substances and Disease Registry (ATSDR) established surveillance projects in state and metropolitan areas to evaluate the completeness of the National ALS Registry and to better describe localized incidence and demographic characteristics of ALS. DESIGN/METHODS: The state and metropolitan project areas make up 17.1% and 10.0% of the U.S. population, respectively. These eleven areas are 64.4% White, 16.0% African-American, 6.7% Asian, and 28.3% of the population is Hispanic. Compared with the US population, Asians, African-Americans, and Hispanics were over-represented. Neurologists submitted one-page case reporting forms for ALS patients under their care from January 1, 2009 through December 31, 2011. Data were analyzed using Microsoft Excel and SPSS. Descriptive statistics are presented. RESULTS: A total of 5912 cases were reported; 74.6% of cases reported were White (n=4411), 9.3% were African-American (n=547) and 3.6% (n=212) were Asian. Of the reported cases 10.8% (n=638) were of Hispanic origin while 77.2% were not Hispanic. Data on average age of diagnosis, stage of El Escorial criteria, and average time from symptom onset to diagnosis by race/ethnicity will also be presented. CONCLUSIONS: Despite over-sampling for minority populations, the percentage of African-American and Asian cases reported was not proportionate to the population, as a smaller percentage of minority cases were reported. The percentage of Hispanic cases reported is less than the percentage of Hispanics in the US population; however, a significant portion of reported cases had an unknown ethnicity. Study Supported by: McKing Consulting Corporation through a contract funded by ATSDR (Contract # GS00F0042P).

Disclosure: Ms. Rechtman has received personal compensation for activities with McKing Consulting Corp. as an employee. Ms. Jordan has received personal compensation for activities with McKing Consulting Corporation as an employee. Ms. Wagner has received personal compensation for activities with McKing Consulting Corporation as an employee. Dr. Horton has nothing to disclose. Dr. Kayehas received personal compensation for activities with McKing Consulting Corporation as an employee.