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Study data kept strictly confidential
In addition to completing brief surveys every six months to a year, Veterans who sign up for the Gulf War project agree to have researchers access their VA electronic medical record.
"We get a lot of information from the medical record," says Brady. He stresses that all study data are kept strictly confidential.
"We have access to the records," says Brady, "but once we enter the data into our system, they are completely de-identified. Once it goes into our database, it's all by number. The name is no longer attached to the health information. Any data that get released with a tissue request from a research lab are also de-identified. We are committed to protecting the confidentiality of Veteran's personal health information."
Brady emphasizes that the Gulf War project is not only for those who were deployed to the Gulf in the early 1990s and developed symptoms afterward. It's for any Gulf War-era Veterans, regardless of whether they were deployed, and regardless of their health status since.
"Enrolling healthy Gulf War Veterans is critical," he says. "One way to understand why some people get sick is to understand why others don't—especially if they were also deployed and exposed to the same things. Healthy Gulf War Veterans who enroll are going to help us figure out what's wrong with their brothers and sisters who are ill."
The brain bank, which also collects spinal cord tissue, remains open to those with ALS. Unfortunately, their life expectancy is short; most patients with the disease die within five years. The researchers give brief surveys to enrollees with ALS every six months to a year to collect crucial demographic and clinical information while they are still alive.
- See more at: http://www.boston.va.gov/BOSTON/features/Biorepository_Aims_to_Help_Solve_Mysteries_of_ALS.asp#sthash.CsBVnQYP.dpuf
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