VA Biorepository Brain Bank
What is the Department of Veterans Affairs (VA) Biorepository Brain Bank?
The VA Biorepository Brain Bank (VABBB) is a human tissue bank that collects, processes, stores and gives out research specimens for future scientific studies. Presently, the VABBB is obtaining neurologic tissue specimens from Veterans who suffer from amyotrophic lateral sclerosis (ALS).
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ALS is a neurologic disease affecting the central nervous system, specifically the brain and spinal cord. Currently, neither the cause nor prevention of ALS is known. Medical researchers are currently examining environmental, toxic, genetic, traumatic, medical, and occupational influences as possible contributors to the development and progression of ALS. Veterans have a higher risk of developing ALS compared with non-Veterans; however, the reasons for this higher risk are currently unknown.
VA has made a major commitment to broadening knowledge of this destructive disease. As part of this commitment, the VA Office of Research and Development sponsored the VA National Registry of Veterans with ALS from 2003 to 2009. The VA ALS Registry enrolled 2050 Veterans with ALS aged 23 to 93 years from combat eras spanning World War II to the 1990-91 Gulf War. In addition to the VA ALS Registry, VA started the VABBB in 2006 to collect brain and spinal cord tissue from Veterans in the Registry. Since then, the VABBB has opened enrollment to all Veterans with ALS regardless of whether they were in the original VA ALS Registry.
Who can take part in VABBB?
Any Veteran with ALS in the U.S. may enroll in the VABBB. We have enrolled Veterans from 47 states. If you are interested in participating, you will be asked to read and sign some consent forms. In addition, your legal next-of-kin (spouse, adult children, or siblings/parents) will be asked to sign a provisional consent agreeing with your decision to make an after-death organ donation. Even after signing the consent forms, you still have the right to withdraw at any time if you so desire.
What are the potential benefits of taking part?
Your donation may help future efforts in ALS research. However, your taking part in this study will not benefit you directly. If you think that you might want to make this generous after-death organ donation, the following information will explain what is involved for you and your family
What can I expect if I take part in this study?
After signing the consent, we will ask you to complete a survey about your health history. We will contact you every six months or so to ask if there have been any changes in your life or your health status. The telephone call and questionnaire should each require around 15 minutes to complete. We will also look at your VA medical record (if you have one) to collect information about your health from time to time and add that information to the VABBB database so that we can follow your health and care over time. This will not require any of your time.
All your information that we collect will be labeled with a code that does not identify you directly. Information collected by the VABBB will be kept confidential as required by law. The results of this study may be published for scientific purposes, but your records or identity will not be revealed unless required by law. The VABBB complies with the requirements of the Health Insurance Portability and Accountability Act (HIPAA) of 1996 and its privacy regulations and all other applicable laws that protect your privacy.
The body tissue that you donate will be collected at the time of your death and will not require any surgery or collection procedures at this time. Upon death, your family or someone they designate must call the on-call study researcher. We will make all of the arrangements for the recovery of your donated organs, including transportation to and from the hospital or facility where the donation will take place so that there will be no cost to your family. The procedure will be done professionally and with dignity at the closest VA Medical Center or by medical professionals at another facility if the VA facility is unable to perform this in a timely manner. An open casket viewing is possible after donation if that is your family's wish. If your next of kin requests it, a copy of the pathology report will be provided when it becomes available. 
Thank you for thinking about this important issue. We have included some answers to frequently asked questions here. Additional information is presented in our VABBB brochure (616 KB, PDF). We are always willing to answer any questions you or your family may have. During working hours, we can be reached at our toll free number: 866-460-1158, or at our office numbers: 857-364-6748 and 857-364-3877
Investigators who are interested in requesting tissue should review our Tissue Request Procedures page.