The ALS Association

ALS Ice Bucket Challenge Progress

Veterans ALS Registry Collecting Data, Provides for Clinical Trials

January 10, 2005

[QUICK SUMMARY:  A registry of veterans diagnosed with ALS is in place and collecting data on a projected 1840 patients.]

The September issue of the journal, ALS and Other Motor Neuron Disorders, details information about a National Registry of Veterans with Amyotrophic Lateral Sclerosis, a program closely linked with The ALS Association that is collecting information about veterans diagnosed with ALS, to shed light on possible environmental factors associated with the disease. The registry will also serve as a stepping stone to clinical trials.

“This registry and the initiative are extremely important, and the investigators are making good progress,” says ALS Association Science Director and Vice President Lucie Bruijn, Ph.D., who also serves on the scientific review committee for the registry.

Investigators Edward Kasarskis, chief of neurology at the VA Medical Center in Lexington, Kentucky, said, “the intent of the registry is to determine the clinical characteristics of the disease in this cohort, follow the progression of ALS, and determine survival. In a parallel effort, DNA samples from these individuals will be obtained for future studies of genotype and clinical phenotype.”

Because the registry needs to follow the course of the disease in the veterans, only living veterans diagnosed with ALS will be included. 

Kasarskis and colleagues write in their report that “it is not known if the prevalence of ALS is higher in civilian veterans compared to those without a history of military service.”

Kasarskis added, that a study by another group, which will appear in the January 10 issue of the journal, Neurology “indicates that ALS occurs at a higher rate in individuals (males) with a history of service in the US military compared to civilians without a military background.”

Concerns about exposures during service had prompted a study of ALS in Gulf War veterans. The current registry will collect information on living veterans with ALS that the investigators expect to identify.

The prevalence of ALS in the U.S. is estimated at six to eight persons per 100,000. Given the 25 million veterans in the country in 2001, the investigators calculate that the initial three years of the ALS registry will probably identify 2300 veterans with the disease. They expect to enroll 1840 veterans diagnosed with ALS. That figure accounts for false positive diagnoses confirmed through reviews of medical records, refusals to participate in the registry, and other factors.

Nearly one-third of veterans of the 1991 Persian Gulf War report chronic health problems including ALS, and studies have shown that Gulf War veterans are twice as likely to develop ALS as those veterans who did not serve in the war. A report issued by the Research Advisory Committee on Gulf War Veterans’ Illnesses, which has not been peer reviewed, concluded that exposure to neurotoxins during the war, rather than stress or other psychological conditions, probably was the cause of illness. This report did not look at toxins in relation to ALS.

The availability of an ALS registry for veterans as well as the increased funds for ALS research will enable studies to try to identify if there are toxins that may be linked to ALS. The Department of Veterans Affairs announced November 12 that the Department will spend $15 million over the next year to study the illnesses experienced by many Gulf War veterans (see http://www.alsa.org/news/archive/department-of-veterans.html.)

The registry’s data base will allow veterans with ALS to be informed about participating in clinical trials for potential treatments. A scientific review committee will evaluate protocols seeking to use the registry’s data for basic and clinical research.  Patient confidentiality is given “meticulous attention,” the investigators write, and the review committee is in place to “ensue that all studies are rigorous and meritorious from a scientific standpoint.”

To find veterans with ALS, the registry investigators will work closely with The ALS Association and other major ALS organizations, to inform eligible individuals among their memberships. A separate web site is also established for the registry, so those people searching the internet for ALS information will encounter the site.

Veterans are defined as having served for a minimum of 90 days.  “As of Dec 23, 2004, we identified 3864 potential individuals with ALS from multiple sources,” Kasarskis said.  “Of these, a total of 614 have been screened and enrolled in the registry after review of medical records by a team of neurologists expert in the diagnosis of ALS.”

Brochures describing the registry are displayed at professional meetings and have been mailed to the members of the American Academy of Neurology, and to all neurologists in the VA health care system. These brochures are also available from The ALS Association and its associated ALS Association chapters.

A toll free number is in place, (877) DIAL ALS, for inquiries on the registry.

Powered by Blackbaud
nonprofit software