[BobbyB]

Being a veteran is a risk factor for Lou Gehrig's Disease (ALS)
A letter in the Des Moines Sunday Register,

Veterans are waging war on yet another front

This Veterans Day, you will read about the heroes who fought for our country in World War II, Korea, Vietnam, Iraq and Afghanistan.

But what you probably won't hear about is the war our veterans continue to wage right here at home - the war against ALS, or Lou Gehrig's disease, which is now striking veterans at nearly twice the rate as the general population.

Although Congress and the administration repeatedly express support for our troops, they have not done enough to support our military men and women and our veterans in the war against ALS. Studies conducted by researchers at the Veterans Administration and Harvard University have found that people who serve in the military, regardless of when or where they served, are approximately twice as likely to die from ALS. What cruel irony. People who have dedicated their lives to defending our country are succumbing to a disease that prevents them from even lifting a finger in their own defense.

ALS strikes silently, slowly eroding a person's ability to control muscle movement. At first, people notice subtle changes, like pain in their feet or slurred speech. But as the disease progresses, they lose the ability to move. Eventually they suffocate because their bodies have been robbed of the most basic human function: the ability to breathe.

It's time we fight back. It's time Congress and the administration support the war against ALS by committing the resources needed to learn what causes the disease and how it can be treated and cured. This Veterans Day, please remember the war our veterans are fighting against ALS and join their fight to end this disease.

- Peggy McVey,
Des Moines.

http://reykr.livejournal.com/752798.html

[BobbyB]

National Registry of Veterans with ALS

A National VA Initiative
(DVA Cooperative Study #500A)

The National Registry of Veterans with Amyotrophic Lateral Sclerosis stopped enrollment of new patients as of September 30, 2007. Thank you for your interest.



INFORMATION FOR RESEARCHERS

The Department of Veterans Affairs (VA) supports a nationwide registry of living veterans who have amyotrophic Lateral Sclerosis (ALS). This effort is directed by the Epidemiologic Research and Information Center (ERIC) at the VA Medical Center in Durham, NC with cooperation from the VA Medical Center in Lexington, KY.

Registry Objectives
To identify as completely as possible all living veterans with ALS, and to follow the health status of these veterans
To collect data, including DNA samples, which will be available for approved studies examining the causes of ALS
To provide a way for the VA to inform veterans with ALS about research studies for which they may be eligible



Data Collected
Comprehensive medical record review to confirm diagnosis
Dates of symptom onset and diagnosis
Site of symptom onset
Diagnostic tests and lab values
Trauma, surgery, and smoking history
Demographic information and military background
Biannual interviews from onset until death, including ALSFERS scores
DNA samples



Erollment
2050 Cumulative enrollment from 3/2000 thru 9/2007
1150 DNA samples collected



Access to Registry Data
Clinical and genetic data from the National Registry of Veterans with ALS are available to VA and non-VA researchers.
Researchers interested in requesting access to data should contact:



Kelli D. Allen, PhD 919-286-0411 x 7090
Barbara Norman 919-286-6936 x 5231
Eugene Z. Oddone, MD, MPH 919-286-6936 x 6936


Or write to us at:
ALS Registry (152)
VA Medical Center
508 Fulton Street
Durham, NC 27705

http://www.durham.hsrd.research.va.gov/alsregistry.asp