Research Highlights
VA Begins Registry for Lou Gehrig’s Disease
For Release Feb. 18, 2003
WASHINGTON — The Department of Veterans Affairs (VA) is creating a national registry of veterans with Amyotrophic Lateral Sclerosis (ALS). The registry will identify veterans with a diagnosis of this fatal, neurological disorder—regardless of when they served in the military—and track their health status.
"This is just one of the steps VA is taking to learn more about this rare, dreadful and deadly disease affecting veterans and civilians alike," said Secretary of Veterans Affairs Anthony J. Principi. "Research into the neurological effects on Gulf War veterans was identified by our Research Advisory Committee on Gulf War Veteran Illnesses as holding real promise. The registry will support that effort."
ALS, also known as Lou Gehrig’s disease, kills the brain and spinal cord cells that control muscle movement, resulting in gradual muscle wasting and loss of movement. Only 20 percent of ALS patients live beyond five years. It affects as many as 30,000 Americans at a given time. The disease usually strikes those between ages 40 and 70. There is no cure yet.
In preliminary findings announced by VA in December 2001, ALS was nearly twice as prevalent among veterans who had been deployed to the Persian Gulf region in 1990 and 1991 than among those not deployed. The incidence was especially high among Air Force personnel who served in the conflict. They were 2.7 times more likely to develop ALS than non-deployed personnel.
The $1.5 million study, funded by VA and the Department of Defense and involving other federal health agencies, has resulted in the first link between Gulf War service and a specific disease. However, other research on veterans of Desert Shield and Desert Storm has confirmed they are at higher risk for a mysterious cluster of symptoms known as Gulf War illnesses, involving chronic fatigue, musculoskeletal problems, asthma, post-traumatic stress disorder, depression, memory loss and other problems.
VA researchers on the Gulf War study recently completed identifying veterans for the final phase of the study and are exploring possible reasons for the higher rate of ALS among the deployed veterans, such as exposure to biological or chemical toxins.
The ALS registry will be directed by the Epidemiologic Research and Information Center at the Durham VA Medical Center, with cooperation from the VA Medical Center in Lexington, Ky. Co-principal investigators are Dr. Eugene Oddone, and Dr.Ed Kasarskis. Veterans of any era who have a diagnosis of ALS are eligible to enroll. They will complete an initial telephone interview, covering their health and military service, and will be interviewed twice yearly thereafter. Enrollees may be contacted regarding clinical trials and other studies related to ALS, but are under no obligation to participate.
"One of the main goals of the registry is to be able to inform veterans about clinical trials, both by VA and non-VA investigators," said Oddone. "We have a scientific review committee of ALS experts who will evaluate potential studies. If they think a particular study has merit, we will inform registry members about it."
Since 1994, VA, the Department of Defense and the Department of Health and Human Services have spent $213 million on 224 research projects relating to the health effects of military deployment. VA plans to spend up to an additional $20 million on this initiative by the end of fiscal 2004.
For more information about the ALS Registry, eligible veterans or their family members or friends can call 1-877-DIAL-ALS.