On October 20, 2010, a Centers for Disease Control and Prevention press release announced the launching of a groundbreaking step in order to learn more about amyotrophic lateral sclerosis (ALS), known by many as “Lou Gehrig’s disease.” This new hub for information, an ALS registry, was started by the United States Agency for Toxic Substances and Disease Registry (ATSDR).
As a sister agency of the CDC, the ATSDR’s mission is to prevent harmful exposures and diseases related to toxic substances.
Purpose of the national ALS registry
The ATSDR launched the ALS registry for the purpose of providing a hub where patients can register information, where that information can be analyzed, and patients and their families can ultimately benefit from new knowledge gained because of the registry. The cause of ALS, for instance, remains unknown.
Primer on Lou Gehrig’s disease
ALS affects nerve cells in both the upper and lower parts of the body. The sick nerve cells lose their ability to trigger intended muscle action, which causes muscles to weaken and then leads to paralysis. Once symptoms develop, most people live about three to five years with ALS before their bodies ultimately succumb to the disease.
There does seem to be a tendency for people diagnosed at younger ages to live longer than those people who develop symptoms at a later age. Most people who have ALS find out when they are between 55 and 75 years old.
ALS is one of a group of conditions that are classified as motor neuron diseases (MNDs), and, as can only be estimated right now, accounts for approximately 85% of all MND cases in the United States. Other MND conditions include progressive muscular atrophy, progressive bulbar palsy, and primary lateral sclerosis.
Number of people afflicted with ALS is currently an unknown
Because medical providers, including doctors, are not required to report ALS cases to the CDC, the number of people afflicted is not known. According to the CDC, reports suggest that between 20,000 and 30,000 people in the United States have ALS.
Is it possible for ALS clusters to exist?
The CDC reports uncertainty as to whether ALS occurs in clusters (e.g. within communities, in school populations, in similar work/recreation environments). Although the CDC does not rule out the possibility that ALS can occur in clusters, studies to date are inconclusive, because sufficient data is lacking.
As the CDC states, “[t]he small number of cases in a possible cluster limits the ability to tell the difference between the number of cases that would occur naturally by chance and a number of cases that is greater than would be expected. Studies with large numbers of people are needed to determine the causes of such a disease.”
Have scientists found any link between ALS and the environment?
Although some studies to date suggest possible links between ALS and exposure to heavy metals (e.g., lead and mercury), trace elements, solvents, radiation, and agricultural chemicals, findings are not conclusive.
Frustrating lack of data
As this article reveals, there simply is not enough information about ALS on record for researchers and public health experts to examine in order to have the certainty needed to identify causes, relationships, potential treatments and hopefully, a cure, for ALS. This frustrating void of information has led to the launching of the ALS registry, which is now available for patients to access themselves.
The ALS registry will act as a hub for the accumulation, organization and analysis concerning ALS risk factors and symptoms, thus giving researchers the data needed to evaluate shared risk factors common among patients, such as heredity or possible environmental exposures, and also help estimate the number of existing ALS cases, and the number of new cases diagnosed each year.
Patient’s choice to participate in ALS registry
This groundbreaking ALS registry will include patient health histories, work experience and family medical histories. The CDC states that patient information will be kept confidential and such information will not released to the public. Patients may wish to discuss this further with their medical providers before registering. Those choosing to go forward can register online at www.cdc.gov/als.
"The more [that] people participate in the registry, the more comprehensive and diverse the data will be to help researchers and physicians better understand this disease," says Dr. Kevin Horton, the ATSDR’s ALS program administrator.
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