Washington, D.C. -- Federal agencies, led by the Department of Veterans Affairs (VA) and the Department of Defense (DoD), are launching a nationwide study to determine the rate of amyotrophic lateral sclerosis, or Lou Gehrig's disease, among military veterans who were on active duty during the Gulf War.
The one-year study will determine if amyotrophic lateral sclerosis (ALS) occurs at a higher-than-expected rate among Gulf War veterans, some of whom have raised concerns about a possible association between ALS and service in the conflict.
Initially, clinicians at VA and DoD identified 28 patients with possible ALS among the 697,000 who were deployed to the Gulf region during the year after the August 1990 Desert Shield mobilization. A preliminary review of those cases and a review of a national mortality study indicated no substantial increase in the rate of ALS among Gulf War veterans and no excess deaths from ALS. The ALS Association (ALSA) estimates the prevalence of ALS in the United States at between six and eight cases per 100,000 persons.
A panel of experts from VA, DoD, the Department of Health and Human Services (HHS), the Centers for Disease Control and Prevention (CDC), the ALSA and university representatives recommended that VA develop a national epidemiologic study of ALS among Gulf War veterans. The study, which will be directed by the Epidemiologic Research and Information Center at the Durham (N.C.) VA Medical Center, is a collaboration involving VA, DoD, HHS and the CDC. ALSA will advise the study leaders.
"We need to identify as completely as possible the number of cases of ALS among Gulf War veterans in order to determine if there is any relationship between ALS and service in the war," said VA Chief Research and Development Officer John R. Feussner, M.D.
"We really do not know what we will find with this research effort," Dr. Feussner said. "If we do find an elevated risk for development of ALS, the finding will have broad implications for veterans, VA, and the DoD alike. This major national study among a relatively young group of veterans could also provide new knowledge about the epidemiology of this rare disease and shed light on possible causes of ALS."
Researchers wish to hear from veterans who have been diagnosed with a motor neuron disease (including ALS) and who were on active duty between August 2, 1990, and July 31, 1991, regardless of whether they actually served in the Gulf theater. The survey group includes active-duty military personnel and reserve or National Guard personnel who were on active duty during that period. Veterans or family and friends of veterans who are deceased or otherwise unable to contact VA may call toll free 1-877-DIAL-ALS (1-877-342-5257) to participate in the survey.
Eligible veterans will be asked to take part in an in-home interview, during which a research nurse will ask questions about experiences on active duty to identify possible factors in the development of their illness. Genetic factors also will be examined. Although the study will not test new treatments, participants will receive a medical examination by a doctor with expertise in diagnosing and treating ALS and other motor neuron disorders.
ALS is a fatal neurodegenerative disease that destroys the brain and spinal cord nerve cells that control muscle movement. As the brain and spinal cord motor nerve cells die, muscles weaken and shrink, and rapid, severe paralysis occurs. Neither a cause nor a cure for ALS is known at this time.
"The ALS Association is grateful that the Department of Veterans Affairs, the Department of Defense, the Department of Health and Human Services, and the Centers for Disease Control and Prevention are collaborating on this epidemiologic study of the occurrence of ALS among Gulf War veterans," said Mike Havlicek, president of ALSA. "This research project will assure a comprehensive effort to identify all Gulf War veterans with ALS, or with other motor neuron diseases. We hope that this major national research effort will provide answers to the questions this study poses, as well as discover new knowledge about ALS in the general population."
Additional information about ALS is available from ALSA's Information and Referral Service toll-free at 800-782-4747 or via ALSA's web site at www.alsa.org. Veterans with questions about general VA services for Gulf War veterans may contact the VA's Gulf War Helpline at 800-749-8387.
