ALS Metropolitan Surveillance Project

Tracking California conducted retrospective surveillance in two diverse metropolitan areas: Los Angeles (LA) county and the San Francisco Bay Area (SFBA). The large diverse sample allowed us to describe the epidemiology of ALS cases in these metro areas and calculate incidence rates by race and ethnicity.

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, Tracking California collaborated with the Agency for Toxic Substances and Disease Registry (ATSDR) to conduct retrospective surveillance in Los Angeles County (LA) and five counties in the San Francisco Bay Area (SFBA).

The project found that general case demographics and incidence rates of ALS cases in these two areas were similar to published studies. However, the differences between the two areas raise questions about how factors such as geography, access to care, and referral patterns affect case ascertainment and diagnosis. This project informs the larger national ALS surveillance effort, which is an important next step for better understanding the current epidemiology of ALS in the U.S. population.

The results of this study are described in the final summary report.

1. Epidemiology and surveillance of amyotrophic lateral sclerosis in two large metropolitan areas in California [2015] Jhaqueline Valle, Eric Roberts, Susan Paulukonis, Natalie Collins, Paul English, Wendy Kaye
2. Survival and Cause of Death among a Cohort of Confirmed Amyotrophic Lateral Sclerosis Cases [2015] Jhaqueline Valle, Eric Roberts, Susan Paulukonis, Natalie Collins, Paul English, Wendy Kaye
3. State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance [2015] Laurie Wagner, Lindsay Rechtman, Heather Jordan, Maggie Ritsick, Marchelle Sanchez, Eric Sorenson, Wendy Kaye