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Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease, is a neurological disease with no known cause or cure. Only 5-10% of ALS cases appear to be related to family history or genetics, prompting questions about what other factors might contribute to the disease. A lack of epidemiological data makes it difficult to know how often ALS occurs, who is most affected, and what the potential causes are. In 2008, the federal Agency for Toxic Substances and Disease Registry (ATSDR) created the National ALS Registry to collect and analyze data on people with ALS in the United States.

 

This registry provides essential data for critical public health research into the burden of this disease, the demographics of ALS patients, and planning for associated health care needs. For the registry to be most useful, it is important to assess completeness of the data, and identify any specific patterns of underreporting. To determine completeness of the registry, ATSDR has provided funds for multiple state and metropolitan area surveillance projects. As part of this effort, CEHTP collaborated with McKing Consulting Corporation to conduct ALS surveillance in Los Angeles County (LA) and five counties in the San Francisco (SF) Bay Area (see map).

 

CEHTP requested data from all practicing neurologists with patients in these six counties. The request generated case reports from 83% of neurologists who reported having patients with ALS, including hundreds of cases from ALS treatment centers in the state. ALS rates were calculated separately for LA and the SF Bay Area, and demographic data were analyzed to describe the populations most affected by ALS. Below are some of the project findings: 

• 1,083 ALS cases were identified; 618 were new cases (diagnosed during 2009-2011). On average, there were 1.4 new ALS cases per 100,000 people per year.

• ALS is more common in men than women, with an incidence ratio of about 13 male cases to every 10 female cases, and is more common among people 60 years of age or older. ALS is less common among non-white populations.

• When comparing the two evaluated regions, SF Bay Area had a higher incidence rate (2.01 cases per 100,000 per year) compared with Los Angeles (1.17 cases per 100,000 per year). Additional demographic differences between LA and SF Bay Area cases are described in the project summary .

Despite extensive outreach efforts, fewer cases than expected were reported for the LA region. Conversely, a greater than expected number of cases were reported for the SF Bay Area. Considering the possibility for under-reporting in LA, the reported rate should be interpreted with caution. Some of the differences in the numbers of cases reported by the two regions may be explained by racial and ethnic differences between the populations, differences in access to care or in referral patterns to a specialty treatment center, and/or other cultural and linguistic factors.

 

This project was an important next step for better understanding ALS in California and helped to improve and support the National ALS Registry. More information about California's ALS surveillance is available here; more information about the National ALS Surveillance Project is available here.  

 

CDC's  Pesticide Exposures module is now available on the National Tracking Network. You will find information and data about reported pesticide exposures by location, the reason for the exposure, and the illness that resulted from the reported exposure. These data come from the American Association of Poison Control Centers (AAPCC) and are available for all 50 states.

 

CDC has also released a new and improved Info by Location tool on the Tracking Network. Now you can enter your county name or zip code and view infographic-style environmental health data for your county. Check it out! 

 

In 2008, the Site Assessment Section of the California Department of Public Health launched the www.communityhealthstudies.org website. This website was created as a response to community requests for more information about health studies and a deeper understanding of how, when, and why health studies are done, and by whom.

 

This important information is now available in Spanish at www.communityhealthstudies.org/es. Explore the website and share with others!