CALABASAS HILLS, Calif., July 10, 2003 (PRIMEZONE) -- The ALS Association (ALSA) is collaborating with the U.S. Department of Veterans Affairs (USDVA) in a nationwide effort to enroll all living veterans with amyotrophic lateral sclerosis (ALS) in the National Registry of Veterans with ALS, the first registry to identify and track the health status of veterans with this progressive neurodegenerative disorder.
"The purpose of this registry is to identify veterans with ALS, make them aware of emerging treatment studies and offer them the opportunity to participate in research into potential causes of the disease," said Dr. Eugene Oddone, co-principal investigator of the health-tracking project.
Veterans of any era who have 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.
"We hope the registry will provide the systematic information that researchers require to develop new studies focused on any potential relationships between military service and ALS," said Dr. Lucie Bruijn, science director and vice president of ALSA.
ALSA, which is advising the registry study leaders, has played a lead role in advocating for the registry, boosting public awareness and in ascertaining prospective enrollees. In addition, ALSA is working closely with researchers in exploring the potential for an array of additional basic science and genetic studies.
"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," Oddone said. "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."
The ALS registry will be directed by the Epidemiologic Research and Information Center (ERIC) at the Durham VA Medical Center, with cooperation from the VA Medical Center in Lexington, Ky. Oddone and Edward Kasarskis, MD, PhD, are co-principal investigators of the registry.
Known as Lou Gehrig's disease, ALS 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. ALS affects as many as 30,000 Americans at a given time. The disease usually strikes those between ages 40 and 70.
In preliminary findings announced by the VA in December 2001, a higher incidence of ALS was noted among veterans who had been deployed to the Persian Gulf region during the Gulf War than among those not deployed. This study, funded by the VA and the Department of Defense and involving ALSA and other health agencies, has resulted in the discovery of the first possible link between Gulf War service and a specific disease. A final report on this study is expected to be published in 2003.
"The ALS Association is committed to assisting the Department of Veterans Affairs in identifying this distinct group of veterans who have ALS and who may become the key to a deeper understanding of any links between the military and this disease," said Mary Lyon, vice president of patient services for ALSA.
The ALS Association is the only national not-for-profit voluntary health organization devoted solely to the fight against ALS. For more information about The ALS Association, visit the ALSA website at www.alsa.org.
For more information about the ALS Registry, eligible veterans or their family members or friends can call 1-877-DIAL-ALS or e-mail als@med.va.gov.