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