ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. ALS results in muscles that are weak and soft, or stiff, tight and spastic.
Early signs and symptoms of ALS include:
The disease frequently begins in your hands, feet or limbs, and then spreads to other parts of your body. As the disease advances, your muscles become progressively weaker. This weakness eventually affects chewing, swallowing, speaking and breathing. For more information about ALS, please click here.
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) or its related forms, such as primary lateral sclerosis (PLS), progressive bulbar palsy (PBP), and progressive muscular atrophy (PMA). Veterans without ALS or other neurological diseases are also eligible to participate in the VABBB, because it is important to also study Veterans without neurological disease in order to learn more about the causes of ALS.
ALS is a neurologic disease affecting the central nervous system, specifically the brain and spinal cord. At this time, neither the cause nor prevention of ALS is known. Medical researchers are 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 1990-1991 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.
Any Veteran with ALS, ALS-related conditions, or those without neurological disease in the U.S. may enroll in the VABBB. We have enrolled Veterans from across the United 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.
Scientists studying neurological disorders must compare brain tissue donated by people affected by these diseases with tissue from people who are not affected by them in order to understand the causes of these conditions, if you do not have a neurological disease or disorder please click here for information on joining the VA Biorepository Brain Bank.
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.
All of 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. After we receive the permission from your next-of-kin to proceed, 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. We are responsible for all costs related to your organ donation as well as transportation of your body to and from the site where the donation is recovered. However, we cannot assume the usual costs of the funeral, burial or cremation. If you have questions about VA death benefits please speak with your local benefits representative or visit the Veterans Benefits Administration web page for more information. 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.
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.
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 857-364-2144. After hours, weekends, or holidays please call our 24/7 cell phone for an on-call ALS Brain Bank researcher at 857-214-0992 if death is imminent.
Investigators who are interested in requesting tissue should review our Tissue Request Procedures page.
During work hours, we can be reached at our toll-free office number: (866) 460-1158
For additional information about ALS please visit the National Institute of Neurological Disorders and Stroke (NINDS ) .