NAME OF CLINICAL TRIAL/STUDY: Veterans With Amyotrophic Lateral Sclerosis - A National Registry

February 2007

According to project coordinator Barbara Norman, the registry has enrolled 1,815 veterans with ALS so far, 950 of whom are living. If they have given their consent, veterans are notified about other ALS studies that might interest them. The investigators are also collecting DNA samples from veterans enrolled in this registry, although participation in the DNA collection isn't required.

The registry remains open.


PURPOSE AND RATIONALE:

The Department of Veterans Affairs (VA) is developing 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, N.C., with cooperation from the VA Medical Center in Lexington, Ky.

This registry will help the VA to understand patterns of ALS among veterans and provide valuable data for future studies. Specific objectives for the Veterans' ALS Registry include the following:

to identify as completely as possible all living veterans with ALS
to follow the health status of these veterans
to collect data that 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
STUDY DETAILS:

Veterans who qualify for the registry will be asked to complete a brief telephone interview, including basic questions about their disease and military history. Brief follow-up interviews with registry enrollees will be conducted twice a year to assess health and functional status. The VA may also contact registry participants about future ALS studies in which they may be able to participate.

See the Web site at www.durham.hsrd.research.va.gov/alsregistry.asp


OPENING/CLOSING DATES: 03/01/2003 - To Be Determined
Closing uncertain
TARGET NUMBER OF PARTICIPANTS: All veterans with ALS willing to participate
RECRUITMENT STATUS: Open
ELIGIBILITY REQUIREMENTS:

All living veterans who have been diagnosed with ALS are encouraged to participate in this research registry. For veterans who may not be able to contact the VA on their own, family members or friends are encouraged to contact VA researchers on the veteran's behalf.


PUBLICATIONS:
CONTACT INFORMATION:

US LOCATIONS

North Carolina
Barbara Norman
Project Coordinator
Durham, NC
Phone: (877) 342-5257
Email: als@med.va.gov