Active Neuromuscular Disease Clinical Trials & Studies Selective Listing

DISEASE CLASSIFICATION(S): Amyotrophic Lateral Sclerosis

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

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America's Veterans


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


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.

Additional information can be found on the Web site of the Epidemiologic Research and Information Center (ERIC).

OPENING/CLOSING DATES: Opened March 2003/Closing approximately 2006

TARGET NUMBER OF PARTICIPANTS: No set number; all veterans with ALS who are willing to participate



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.


To contact the VA study coordinators, eligible veterans or family and friends of eligible veterans can call, send e-mail or write:

ALS Registry (152)
508 Fulton Street
Durham, NC 27705
phone (toll-free): (877) DIAL-ALS; (877) 342-5257