142nd APHA Annual Meeting and Exposition

Annual Meeting Recordings are now available for purchase

Los Angeles and San Francisco Bay Area Metropolitan Amyotrophic Lateral Sclerosis (ALS) Surveillance Project

142nd APHA Annual Meeting and Exposition (November 15 - November 19, 2014): http://www.apha.org/events-and-meetings/annual
Tuesday, November 18, 2014

Jhaqueline Valle Palominos, MPH , Public Health Institute, California Department of Public Health, Richmond, CA, CA
Natalie Collins, MSW , Public Health Institute, California Department of Public Health, Richmond, CA
Eric Roberts, MD, PhD , California Environmental Health Tracking Program, California Department of Public Health, Richmond, CA
Susan Paulukonis, MPH, MA , California Department of Public Health, Richmond, CA, CA
Paul B. English, PhD , Environmental Health Investigation Branch, CA Dept of Public Health, Richmond, CA
Wendy Kaye, Senior Epidemiologist , Surveillance and Registries Branch, Agency for Toxic Substances and Disease Registry, Atlanta, GA
Background: ALS is a fatal, rapidly progressive neurological disease. Few population-based surveillance systems and registries exist for neurological diseases such as ALS, making calculation of incidence rates and impact assessment difficult. As part of a nationwide surveillance effort, funded by ATSDR in support of the National ALS registry, retrospective surveillance was conducted in two diverse metropolitan areas:  Los Angeles County (LA) and the San Francisco Bay Area (SFBA).

Methods: We contacted ALS treatment centers, hospitals, and practicing neurologists to identify cases. Case eligibility criteria included residency in SFBA or LA, and treatment for or diagnosis of ALS between January 01, 2009 and December 31, 2011. Case reports included demographic and clinical data; these were de-duplicated and used to calculate incidence rates.

Results: We identified 1085 cases, 540 in SFBA, (150% of expected cases) and 545 in LA (69% of expected); 618 were incident cases. Cases were more likely to be male and White with an average diagnosis age of 61.5yrs. There were significantly more cases (p<0.05) in LA who were foreign-born (LA: 22%; SFBA: 14%), Black (LA: 10%; SF: 6%) or Hispanic (LA: 19%; SF: 10%). Conversely, the age-adjusted incidence rates (per 100,000) were significantly higher in SFBA for Whites (LA: 1.4; SFBA: 2.49) and Hispanics (LA: 0.66; SFBA: 1.57) compared to whites and Hispanics in LA. Both areas had a similar number of reporting neurologists despite differences in population and geographic size. 

Conclusions: General case demographics and incidence rates in 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.

Learning Areas:


Learning Objectives:
Describe the epidemiology of ALS in SFBA and LA. Discuss possible factors affecting case ascertainment in ALS surveillance Describe national ALS surveillance efforts.

Keyword(s): Epidemiology, Surveillance

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am an epidemiologist with the Environmental Health Tracking program. I was involved in all aspects of the implementation, execution, and analysis of the ALS surveillance project.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.