Scientific research into most diseases, including ALS, depends on the direct study of human tissues that have been affected by the disease. These tissues are generously donated by patients who are willing to undergo an autopsy after their deaths.
Tissue Donations for Research
Your Gift to Future Generations
Frequently Asked Questions
Why consider tissue donation?
How does an autopsy work?
An autopsy is a careful examination of the external body and internal organs after death. This examination is performed by a specially trained physician and is carried out with dignity and respect for the deceased. The examination can be restricted to a particular organ system, like the nervous system, but this will limit the amount of information gained from the autopsy. Surgical techniques will be used to remove the tissues being donated for research purposes.
How will future generations benefit from tissue donation/autopsy?
The causes of most neuromuscular diseases are poorly understood and treatments are rare. It is our hope that patient autopsies and tissue donations will provide researchers with the tools needed to:
- Understand the cause and course of disease
- Design better and more accurate diagnostic tests
- Promote the development of treatments
How will my family benefit from tissue donation/autopsy?
Many families find comfort in knowing that the information gained from their loved one’s autopsy or tissue donation may help future generations live longer. Furthermore, the information gained from an autopsy can directly help a family by:
- Confirming that diagnosis and treatments were appropriate
- Clarifying a specific cause of death
- Identifying clues regarding the risk of disease in relatives
How will the donated tissue be used?
Donated tissue will be stored at Washington University for use in current and future research studies. Samples will be made available for carefully screened projects here at Washington University and at other research institutions.
When should plans be made for the autopsy/tissue donation?
Although it can be difficult to think about and even harder to discuss, it is never too early to begin a dialogue with your family regarding your autopsy beliefs, feelings, and wishes. If you agree to an autopsy and tissue donation, you will sign a consent form that will be kept in your medical record. Your family should be informed of your wishes and familiarize themselves with the steps required after death.
Will there be a charge for the autopsy/tissue donation?
Because of our relationship with Barnes-Jewish Hospital, this service is provided free-of-charge to our neuromuscular patients. Families will still be responsible for the costs of funeral arrangements and transportation.
Will funeral arrangements need to be altered?
The autopsy process and removal of tissues should not interfere with viewing of the body or open-casket services. When arranged prior to death, the autopsy is typically completed within 24-48 hours and therefore does not delay funeral arrangements.
What do we do at the time of death?
The time surrounding the death of a loved one can be intensely emotional and even disorienting. We recommend appointing a trusted member of the family or hospice team who will be responsible for initiating the autopsy/tissue-donation process at the time of death. The simple steps are outlined here:
Steps to initiate an autopsy/tissue donation:
1. The process works best if the autopsy team knows when a patient’s death might be soon. A quick message to the Neuromuscular Office at 314-362-6981 is sufficient.
2. Before calling, assemble contact information to give the call line operator, including the patient’s name, date of birth, and several phone numbers where the next-of-kin can be reached.
3. Call the “Tissue Donation Program pager 314-360-7673 When asked, enter your 10-digit phone number followed by the # sign. If you do not receive a call back within 15 minutes, please try paging again. If no answer is received, then call the Barnes hospital operator at 314-362-5000 and ask them to page the “On-call Neuromuscular fellow” and indicate that you are calling to initiate a research autopsy.”
Even though a preliminary consent form has been signed, a pathologist may need to speak with the next-o- kin to confirm that consent. Arrangements will be made for transporting the body to the hospital. Once the autopsy has been completed, the funeral home designated by the family will be contacted.
For additional information, please contact:
Department of Neurology, Neuromuscular Division
660 S. Euclid Box 8111
St. Louis, Mo 63110