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Follow-up on Gulf War Study

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News from ALSA

Follow-up on Gulf War Study

     In mid-December 2001, the Department of Veterans Affairs reported that preliminary evidence from the Study of ALS among Gulf War Veterans indicated that veterans who served in Desert Shield-Desert Storm were twice as likely as their non-deployed counterparts to develop ALS. The data from the study is subject to peer review and has not yet been published.
     Since that time, ALSA's Patient Services Department has just received the following information from the Veterans Administration Research and Development Department.

Case ascertainment continues
     The "Study of ALS among Gulf War Veterans" will continue to screen and "count" new patients - both Gulf deployed and non-Gulf deployed. Although these "new" cases cannot be added to the study data that have already been analyzed, they will be counted and reflected in a revised rate of incidence (as appropriate). Veterans with ALS or families of these veterans who served in the military between August 2, 1990 and July 31, 1991 are encouraged to consider self-referral to this study. Note that veterans need not have been deployed to the Gulf War region to self refer to the study.
     The toll-free number is still in effect and is the best way for veterans and their families to self refer. To be included in a revised count, veterans or family members should call 1-877-342-5257. This telephone number should not be used for benefits questions.

Next phase of Gulf War study
     The next phase of the study is funded and is in its early stages. This part of the study evaluates environmental and other exposures that the veterans with ALS experienced to determine if a statistical association between any exposure's) and ALS is observed. The analysis will include both the deployed and non-deployed groups. We do not yet have a timetable for when the results of this study will be concluded and reported.

Veterans Benefits Update
     The study staff has begun contacting the 40 Gulf deployed ALS patients and families, asking their consent to have the Veteran's Benefits Administration (VBA) contact them to discuss benefits. Thirty-five of the 40 patients/families have been contacted as of January 9th. The VBA has already begun reaching out to the thirty-five patients/families to discuss benefit eligibility. At this time, ALSA does not know what benefits are being offered.

Contact: Mary Lyon
Ph: (818) 880-9007, Ext. 217
e-mail:
mary@alsa-national.org

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