ALS Prevalence Studies Underway Near Hazardous Waste Sites

People with ALS encouraged to identify themselves in study areas

August 3, 2004

Responding to community concerns, the Agency for Toxic Substances and Disease Registry (ATSDR), a public health agency of the U.S. Department of Health and Human Services, is funding an environmental health program to determine the prevalence of amyotrophic lateral sclerosis (ALS) in areas surrounding hazardous waste sites in five states.

The neurodegenerative disease, commonly referred to as Lou Gehrig’s disease, attacks nerve cells in the brain and spinal cord resulting in muscle weakness and atrophy.   Patients usually survive between two and five years from the time of diagnosis.

Researchers are focusing on communities near hazardous waste sites in Illinois , Massachusetts , Missouri , Texas and Washington .  Separate studies also are ongoing to determine the prevalence of multiple sclerosis (MS) in Missouri , Illinois , Texas , Washington , Massachusetts and Ohio .

The ALS Association (ALSA) and its network of chapters is providing assistance in these studies through the coordination of efforts to identify people with ALS in the study areas.  In most cases, patients are being identified through their neurologists.

“Finding potential links between ALS and the environment is important for a better understanding of the disease,” said Mary Lyon , vice president of patient services for ALSA.  “The ALS Association is putting its efforts into working with ATSDR and local investigators to raise awareness and identify people with ALS for these studies.”

For several years, ALSA has been working closely with ATSDR, a sister agency of the Centers for Disease Control and Prevention (CDC), and CDC on strategies to develop ALS prevalence estimates and reporting procedures as well as on techniques for disease surveillance to achieve improved understanding of the incidence and pathogenesis of ALS.

“Studies of ALS incidence and prevalence in areas of hazardous waste, when conducted in parallel with similarly detailed studies in areas without such waste,  may help determine what type of environmental factors contribute to the development of ALS,” said Carmel Armon, M.D., chair of a scientific advisory committee established by ALSA regarding the ALS Kelly Air Force Base study. Armon is chief of the Division of Neurology at Baystate Medical Center in Massachusetts .

“If increased incidence is identified in specific regions,” Armon continued, “it may provide an estimate to the magnitude of the external environmental impact, and focus research on toxic substances specific to those areas and the mechanisms by which they might induce ALS. If no increased incidence is identified, it will serve as reassurance to the communities in question, and may refocus research away from futile directions. Consequently, I support well-designed studies such as those conducted by ATSDR, and hope to see more of them.” 

ATSDR is working with an array of public health agencies, health care associations and physicians to develop data to estimate the prevalence of ALS in these study areas.   The prevalence reports, which will be issued in 2005, will serve as the basis for possible future ATSDR studies of potential environmental risk factors. 

“These communities are concerned about hazardous waste in their area and about Lou Gehrig’s disease and MS,” said Dhelia Williamson, epidemiologist for ATSDR and project officer for the study.  “We will answer the question about how many people have ALS and MS in these areas.”

The ALS prevalence research is ongoing in the following areas:

For additional information on ATSDR’s ALS and MS projects, contact Dhelia Williamson, ATSDR, at (888) 422-8737 ext 0585 or djw8@cdc.gov.

The ALS Association is the only national not-for-profit voluntary health organization dedicated solely to the fight against ALS.  For more information, contact ALSA at 818-880-9007 or visit the association’s Web site at www.alsa.org .

Questions and Answers

How can I learn more about one or more of these studies?  How can I enroll in one of these studies?

There are several ways to learn more.   You can contact The ALS Association chapter in your state and/or the ATSDR investigator in each state.  In addition, you can call the toll-free telephone for ATSDR.  All contact information is listed in this announcement.

Do hazardous waste sites contribute to the development of ALS?

Investigators are continuing to probe possible interaction between ALS and the environment.   “The environment is likely to play a role,” said Lucie Bruijn , Ph.D., science director for ALSA.  “I believe the disease is caused by interaction between environmental factors and a person’s own genetic make- up, explaining why one person may be more vulnerable to the disease than another.  It is difficult to pinpoint what genes and environmental factors are involved, but more emphasis is being placed in this area of research.”

Will these studies identify toxic substances linked to ALS? 

No. The goal of these studies is to determine the number of individuals with ALS living in these areas.  The next step will be to obtain funding to conduct a study to examine the complex relationship between development of ALS and exposure to environmental agents and genetic susceptibility.

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01/04/06 05:15:08 PM