Multiple Sclerosis and Amyotrophic Lateral Sclerosis-Related Projects

Ongoing and Completed Projects,
Health Investigations Branch,
Division of Health Studies

Residents of communities living near hazardous waste sites have expressed concern about elevated rates of neurological conditions such as multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS) and possible associations with environmental exposures. The absence of population-based registries for these diseases complicates the task of enumerating cases in a community, and limits the ability of local, state, and federal public health agencies to respond to these concerns.

MS is a neurological disease believed to be the result of a complex combination of environmental, genetic, and autoimmune factors. This disease is characterized by inflammation, destruction, and scarring of cells that protect the neurons in the central nervous system. It is one of the most common disabling neurological diseases in young people with the typical age-at-onset being 20 to 40 years. MS is approximately twice as common in women as in men, and recent data suggest that the prevalence among women is increasing (Figure 1).

Figure 1. Estimated number of persons (per 100,000 civilian, non-institutionalized U.S. population) reporting multiple sclerosis as a cause for limitation of activity, National Health Interview Survey, 1982-1996.

Noonan CW, Kathman SJ, White MC. Prevalence estimates for MS in the United States and evidence of an increasing trend for women. Neurology 2002;58:136-8.

ALS is a neurodegenerative disease that affects both upper and lower motor neurons. This disease is characterized by the progressive deterioration and loss of these motor neurons. The loss of nerve stimulus to specific muscles results in atrophy and progressive weakness that leads to paralysis. The length of survival in most patient populations that have been evaluated is 3 to 5 years. The onset of ALS is age-related with the highest rate of onset occurring between 55 and 75 years of age. ALS is more common in males than females by a ratio of 1.5-2 to 1, but recent studies suggest that this difference is decreasing over time. Mortality rates for motor neuron disease, a classification that predominantly includes ALS cases, indicates increasing trends over time (Figure 2).

Figure 2. Age-adjusted Motor Neuron Disease Mortality Rate, United States, 1969-1998.

Noonan CW, Hilsdon R, White MC, Wong L-Y, Zack M. Continuing trend of increased motor neuron disease mortality in the United States. Epidemiology 2002;13:S202.

In cooperation with its public health partners, ATSDR is developing a capacity to respond to community concerns and more fully understand the epidemiology of MS and ALS. The Health Investigations Branch of the ATSDR Division of Health Studies has funded several partners to estimate the prevalence of neurological diseases in communities near hazardous waste sites. nThese research activities will serve as a basis for future studies of MS and ALS and the investigation of potential environmental risk factors.

Multiple Sclerosis in Sugar Creek and Independence, Missouri

Residents of Sugar Creek, Missouri, a small community adjacent to an Amoco oil refinery near Kansas City, have indicated their concern about the rate of MS in their community. Anecdotal information suggested a two- to four-fold elevation in MS prevalence above the expected national figures. The Jackson County, Missouri, Health Department entered a cooperative agreement with ATSDR in September 2000, to more fully explore this question. This research activity included the development of methods for case ascertainment and confirmation and the estimation of MS prevalence for Sugar Creek and the city of Independence, Missouri. These two entities have a combined population of almost 120,000. A final report for this project is expected in 2003.

For more information, please contact Dr. Paula Livingston, Jackson County Health Department, at (816) 881-4424.

Determining the Prevalence of Multiple Sclerosis Among Residents of Lorain County, Ohio

Citizens of Wellington, a small community in Lorain County, Ohio, expressed concerns about the potential association between a higher than expected number of individuals with MS and an adjacent foundry and landfill. Preliminary data indicated an almost six-fold elevation in the prevalence of MS. The Ohio Department of Health entered a 2-year cooperative agreement with ATSDR in September 2000, to develop precise diagnostic criteria and determine the actual prevalence of MS in the area. The Ohio Department of Health also created a community task force to promote community support for this project, to help identify individuals with MS, and to communicate project findings to the community. A final report for this project is expected in 2003.

For more information, please contact Robert Indian, Ohio Department of Health, at (614) 644-7025.

El Paso Multiple Sclerosis Cluster Investigation

In 1997, ATSDR provided a grant to the Texas Department of Health to investigate a report of elevated MS prevalence among a cohort of elementary students whose school was in close proximity to a smelter facility. This study of more than 5,000 former students included a review of the medical records of study participants who reported having MS. Past environmental sampling data indicated high levels of metals in the area. The investigators found a two-fold increased risk for MS among this cohort and recommended a multi-site case control study be done to examine metals exposure as a potential risk factor for MS. A final report for this study was printed in August 2002.

For more information, please contact Judy Henry, Texas Department of Health, at (512) 458-7269.

Development of Prevalence Baseline Rates for Multiple Sclerosis in Lubbock, Texas

The Texas Department of Health entered into a 2-year cooperative agreement with ATSDR in September 2000, to develop methodologies for determining MS prevalence estimates in Lubbock, Texas, and surrounding counties. This 19-county area has a population of more than 420,000 people. Investigators reviewed records of local neurologists to identify individuals diagnosed with MS. Results from this study will establish regional background prevalence estimates. These estimates will be compared with a previously studied Texas cohort suspected of having elevations in MS prevalence. The chosen study area also will allow for an estimation of prevalence among Hispanics, a population for which no reliable MS data currently exists. A final report for this project is expected in 2003.

For more information, please contact Judy Henry, Texas Department of Health, at (512) 458-7269.

Determining Baseline Prevalence for Provider Diagnosed Multiple Sclerosis and Amyotrophic Lateral Sclerosis in Herculaneum, Missouri

The Missouri Department of Health and Senior Services (DHSS) has received numerous requests to investigate possible adverse health effects related to living near a lead smelter in Herculaneum, Jefferson County, Missouri. A lead smelter, in operation for more than 100 years, has emitted pollutants, including zinc, lead, copper, chromium, and cadmium in the area. The soil and environmental levels of pollutants in Herculaneum exceed recommended EPA limits. At the same time, elevated levels of lead among adults and children have been documented. A cross-sectional prevalence study and cluster investigation will address the community concerns of excess MS and ALS, and define the epidemiological characteristics of cases. In addition to Herculaneum, MS and ALS prevalence will be estimated in the other communities of Jefferson County which is comprised of over 193,000 people. This project is expected to be complete in 2005.

For more information, please contact Dr. Eduardo J. Simoes, Missouri Department of Health and Senior Services, at (573) 751-6128.

Prevalence of Multiple Sclerosis and Amyotrophic Lateral Sclerosis in Five Illinois Communities

Citizens in five Illinois communities have concerns about the number of people with MS and ALS in their communities and a possible link to hazardous waste sites in their area. Hazardous waste contaminants of concern include metals, fertilizers, and fuels. In each community a local volunteer outreach coordinator will contact people suspected of having MS and ALS. People suspected of having MS will have their diagnosis verified by the project neurologist after a review of their medical records. Information will be gathered on referral patterns and the use of medical services for MS and ALS. Statewide support is provided by the Illinois Department of Public Health, the Greater Illinois Chapter of the Multiple Sclerosis Society, and the Les Turner ALS Foundation. The project will be conducted by the University of Illinois College of Medicine at Rockford. Project completion is expected in 2005.

For more information, please contact Joel B. Cowen, University of Illinois College of Medicine at Rockford, at (815) 395-5639.

Surveillance for Multiple Sclerosis and Amyotrophic Lateral Sclerosis in Texas

MS and ALS have been under intense focus in both El Paso and San Antonio, Texas. El Paso and San Antonio area residents are concerned with the apparent excess of these diseases and their potential links to environmental contaminants. In 2000, the Texas Department of Health received a grant from ATSDR to conduct a pilot MS surveillance project in 19 north Texas counties for a two-year period. This project will build on methods and expertise developed in the pilot project and continue MS surveillance in the 19 north Texas counties as well as expand surveillance in the El Paso and San Antonio areas. Project goals are to develop incidence rates and prevalence estimates for ALS in the three study areas, and to conduct surveillance for MS in El Paso and San Antonio. This project is expected to be complete in 2005.

For more information, please contact Judy Henry, Texas Department of Health, at (512) 458-7269.

Prevalence of Amyotrophic Lateral Sclerosis and Multiple Sclerosis in Southeastern Massachusetts

There has been an increasing interest in MS and ALS, particularly as they relate to the National Priorities List (NPL) and other state identified hazardous waste sites in southeastern Massachusetts. Through a cooperative agreement with ATSDR, the Massachusetts Department of Health and Human Services, Bureau of Environmental Health Assessment (BEHA) will address the concerns expressed by multiple communities about MS and ALS. BEHA will develop the methodology for estimating the prevalence of ALS and MS in two locations comprising 5 towns where there is active concern about the suspected unusual occurrence of these diseases. These communities also have concerns about the hazardous wastes sites with contaminates that scientific literature suggests may be associated with these outcomes. The two study locations are the town of Middleborough and the four town area surrounding the South Weymouth Naval Station (SWNAS), which is an NPL site. For comparison, the prevalence of MS and ALS will also be estimated for 23 other towns in southeastern Massachusetts. This project is expected to be complete in 2005.

For more information, please contact Dr. Robert Knorr, Massachusetts Department of Health and Human Services, at (617) 624-5757.

Determining the Prevalence of Multiple Sclerosis near Hanford, Washington

A study is being performed near the Hanford Nuclear Reservation in Washington to determine the prevalence of Multiple Sclerosis (MS) in 3 eastern Washington counties. The nuclear reservation has released radiation and chemicals into the environment for the past 50 years. Research that will be conducted is designed in response to a request by ATSDR for the development of methods to quantify the number of existing cases of MS in the populations living near the hazardous waste sites. Client data from the local chapters of the National Multiple Sclerosis Society suggest higher rates of self-reported MS patients in the Tri-City area and in Spokane. Cases will be identified through multiple sources and prevalence will be estimated using capture-recapture methodologies. The study will be conducted by the Oregon Health and Science University. This project is expected to be complete in 2005.

For more information, please contact Dr. William E. Lambert, Oregon Health & Science University, at (503) 494-9488.

ATSDR's toll-free information line: (888) 422-8737