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One of the most important ways people living with ALS can help advance research is to donate their brain and spinal cord upon death. One donation provides enough samples for hundreds of ALS research studies.
Tissue donations are extremely valuable because they give researchers the ability to look directly at the brain, spinal cord, and affected motor neurons—something that is not possible while a person is alive. |
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ALS researchers need more people to volunteer to donate tissue. Research teams in the U.S. and around the world frequently search for and share tissue samples that can help them better understand ALS and accelerate the development of effective treatments.
“Using human-based tissues is the most critical element for successful drug development. Drugs that seem to work in cell and animal models typically don’t work in people, and we need to confirm that the drug gets into the brain and spinal cord, and actually hits the appropriate target in the human disease. The only way to do that is to collect tissues and biofluids from ALS patients and use them in our research studies.”
- Dr. Robert Bowser, Barrow Neurological Institute
- Dr. Robert Bowser, Barrow Neurological Institute
Tissue donation can be a sensitive topic because the brain and spinal cord can only be donated after a person dies. Doctors don’t always talk about tissue donation, and it can evoke strong emotions within families.
If you might be interested in tissue donation, the rest of this page answers common questions and outlines the steps you would need to take.
If tissue donation is not right for you, you can still help advance ALS research by participating in clinical trials, observational studies, or advocacy efforts. Or, like many people living with ALS, you may decide that you would rather spend your time focusing on priorities other than research.
If you might be interested in tissue donation, the rest of this page answers common questions and outlines the steps you would need to take.
If tissue donation is not right for you, you can still help advance ALS research by participating in clinical trials, observational studies, or advocacy efforts. Or, like many people living with ALS, you may decide that you would rather spend your time focusing on priorities other than research.
Understanding the Terminology
Programs that collect and store donated tissue (primarily the brain and spinal cord) for research are usually called tissue banks. You may also hear the term brain bank even though ALS brain banks also collect the spinal cord. Biorepository is a more formal term you might see in program names or on consent forms. All three terms refer to programs that receive, process, store, and share donated tissue with researchers.
Note: Donating tissue for ALS research is not the same as organ donation. It is also different from donating your body for general medical research. General autopsy or medical research programs don’t preserve the brain or spinal cord, both of which are essential for ALS research.
Note: Donating tissue for ALS research is not the same as organ donation. It is also different from donating your body for general medical research. General autopsy or medical research programs don’t preserve the brain or spinal cord, both of which are essential for ALS research.
Answers to Common Questions about Tissue Donation
People living with ALS and family members often have questions about tissue banking and how it works. Here are answers to some commonly asked questions.
Are there eligibility requirements?
Most people with an ALS diagnosis will be eligible to participate in tissue donation if they wish, including people who also have frontotemporal dementia (FTD). Some programs may require that you live within a certain distance of their autopsy site, though national ALS autopsy programs make it possible for people even in remote areas to participate in tissue donation programs.
What happens to the brain and spinal cord?
The tissue collected will be stored in a tissue bank for years. When researchers make requests, the program will ship small samples or microscope slides containing a thin slice of tissue to study.
Will donor identity be kept confidential?
Tissue donation programs must follow healthcare privacy laws. Tissue samples are de-identified and coded so that donor identities remain confidential.
What happens to the body?
Shortly after death, the body is transported to the autopsy site—often a local hospital—and returned to the funeral home or other location, usually within 24-48 hours.
Can there be an open casket?
Yes. Tissue donation does not disfigure the body.
What information will families receive?
Some programs provide an autopsy report to the next of kin or spouse. Others do not. Reports may or may not confirm the ALS diagnosis. Autopsy reports do not include information about a potential genetic cause; this can only be done through genetic testing during a person’s life.
How much does it cost?
The costs of the autopsy and transportation to and from the autopsy site are generally covered by ALS tissue donation programs. Funeral expenses are not covered by programs.
Are there eligibility requirements?
Most people with an ALS diagnosis will be eligible to participate in tissue donation if they wish, including people who also have frontotemporal dementia (FTD). Some programs may require that you live within a certain distance of their autopsy site, though national ALS autopsy programs make it possible for people even in remote areas to participate in tissue donation programs.
What happens to the brain and spinal cord?
The tissue collected will be stored in a tissue bank for years. When researchers make requests, the program will ship small samples or microscope slides containing a thin slice of tissue to study.
Will donor identity be kept confidential?
Tissue donation programs must follow healthcare privacy laws. Tissue samples are de-identified and coded so that donor identities remain confidential.
What happens to the body?
Shortly after death, the body is transported to the autopsy site—often a local hospital—and returned to the funeral home or other location, usually within 24-48 hours.
Can there be an open casket?
Yes. Tissue donation does not disfigure the body.
What information will families receive?
Some programs provide an autopsy report to the next of kin or spouse. Others do not. Reports may or may not confirm the ALS diagnosis. Autopsy reports do not include information about a potential genetic cause; this can only be done through genetic testing during a person’s life.
How much does it cost?
The costs of the autopsy and transportation to and from the autopsy site are generally covered by ALS tissue donation programs. Funeral expenses are not covered by programs.
“Brain and spinal cord donation is one of the best ways you can participate in the search for a cure and help solve the mystery of ALS."
- Ron Faretra, Veteran living with ALS
- Ron Faretra, Veteran living with ALS
Planning Ahead
If you think you might want to donate your brain and spinal cord to ALS research, you will need to start researching and planning ahead as soon as possible. Coordinating logistics will take time—and tissue donation cannot typically be arranged after death.
Even though it may be a difficult or uncomfortable conversation, it is very important to express your wishes directly to family members and loved ones. Communicating clearly and answering questions ahead of time can help reduce future confusion and stress for everyone.
Even though it may be a difficult or uncomfortable conversation, it is very important to express your wishes directly to family members and loved ones. Communicating clearly and answering questions ahead of time can help reduce future confusion and stress for everyone.
Finding an ALS Tissue Donation Program
Searching online for a place to donate tissue can be confusing, and many general tissue donation programs don’t collect both the brain and spinal cord.
The best place to start is with the neurologist at your ALS clinic. Due to the sensitive nature of the topic, many doctors don’t suggest tissue donation to their patients. You will likely need to bring it up and express your interest.
The best place to start is with the neurologist at your ALS clinic. Due to the sensitive nature of the topic, many doctors don’t suggest tissue donation to their patients. You will likely need to bring it up and express your interest.
The VA ALS Biorepository Brain Bank
If you are a Veteran living with ALS, the VA has a brain bank that is specifically focused on ALS. Any Veteran with ALS or ALS-related conditions can enroll. Learn more
Ask if your clinic works with an ALS tissue donation program or if their medical center performs autopsies. If not, ask if there is another autopsy site in your area that they recommend. Most hospitals with pathology departments should be able to collect and store tissue.
If you find a tissue donation program, make sure you live within the geographic range that they serve. There are rules and regulations about transporting bodies across state lines, so it is usually best to find an autopsy site within your state.
If you find a tissue donation program, make sure you live within the geographic range that they serve. There are rules and regulations about transporting bodies across state lines, so it is usually best to find an autopsy site within your state.
Target ALS Tissue Donation Program
Target ALS is a research foundation that launched its ALS postmortem tissue biorepository in 2014. If you live within a 200-mile radius of one of their six sites (Phoenix, Washington, DC, New York City, San Diego, St. Louis, and Edinburgh, Scotland), you should be able to enroll in their program. Target ALS also accepts tissue donations from healthy control donors (individuals without central nervous system diseases). Learn More
The National Institutes of Health (NIH) runs a nationwide tissue donation program that performs autopsy services for many neurodegenerative diseases, including ALS. If you live in the U.S., you are eligible to participate in this program. You can enroll through the Brain Donor Project.
Leaders of ALS tissue bank programs continue to work together to enhance and centralize the ALS tissue donation collection process and the distribution of tissue to ALS researchers worldwide. Therefore, you can either work with a specific ALS tissue bank program or coordinate with a local autopsy site. Either way, your donation will be used by ALS researchers.
Leaders of ALS tissue bank programs continue to work together to enhance and centralize the ALS tissue donation collection process and the distribution of tissue to ALS researchers worldwide. Therefore, you can either work with a specific ALS tissue bank program or coordinate with a local autopsy site. Either way, your donation will be used by ALS researchers.
For Additional Guidance
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If you are still unsure of what to do, or are unable to find a place where you can donate tissue, Dr. Lyle Ostrow, Director of the Temple University ALS Postmortem Core, has offered to help guide potential tissue donors with their search. You can email him at [email protected].
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Coordinating Logistics
Once you find a place to donate tissue, it is important to put a clear plan in place so that everyone—family members, the donation program, the funeral home, hospice, the social worker, or anyone else involved—has the information they need. When you enroll in an ALS tissue donation program, they will help and provide you the necessary information and contact numbers.
Be sure to figure out ahead of time who will be responsible for transportation to and from the autopsy site, and who will pay for it. Many ALS tissue donation programs pay for all transportation costs and can help coordinate transportation.
When the time comes, numerous things will need to happen quickly. It may be helpful to choose one trusted person, such as a family member or friend, to coordinate the process.
For some tissue donation programs, your next of kin will need to sign an autopsy consent form after death in order for your tissue donation to take place. Some states require this. Your next of kin is not necessarily the same person who is your designated medical power of attorney.
Find out who is considered your next of kin and explain that you want your wishes to be honored. There have been instances when the next of kin refuses to sign the consent form or contact the ALS tissue donation program.
Be sure to figure out ahead of time who will be responsible for transportation to and from the autopsy site, and who will pay for it. Many ALS tissue donation programs pay for all transportation costs and can help coordinate transportation.
When the time comes, numerous things will need to happen quickly. It may be helpful to choose one trusted person, such as a family member or friend, to coordinate the process.
For some tissue donation programs, your next of kin will need to sign an autopsy consent form after death in order for your tissue donation to take place. Some states require this. Your next of kin is not necessarily the same person who is your designated medical power of attorney.
Find out who is considered your next of kin and explain that you want your wishes to be honored. There have been instances when the next of kin refuses to sign the consent form or contact the ALS tissue donation program.
State Anatomy Boards
Another route for tissue donation is pre-enrolling with a state anatomy (or anatomical) board. When you pre-enroll, you sign a consent form, which technically makes the board your next of kin. This means that your next of kin will not be asked to sign the autopsy consent form.
State anatomy boards can coordinate the tissue donation process and often already have arrangements with ALS tissue donation programs. You can either ask your neurologist for contact information or search this Directory of US Programs.
State anatomy boards can coordinate the tissue donation process and often already have arrangements with ALS tissue donation programs. You can either ask your neurologist for contact information or search this Directory of US Programs.
What Happens Upon Death
When a tissue donor dies, the designated point person should notify the tissue donation program as soon as possible. Some programs have 24/7 on-call coverage.
Ideally, the program will coordinate all logistics, including transportation to the site, the autopsy, and the return of the body to the specified location. Each program differs, but usually the autopsy has to happen within 24 hours of death. The body is often returned within 24-48 hours. Your program should confirm these and other details well in advance.
Ideally, the program will coordinate all logistics, including transportation to the site, the autopsy, and the return of the body to the specified location. Each program differs, but usually the autopsy has to happen within 24 hours of death. The body is often returned within 24-48 hours. Your program should confirm these and other details well in advance.
Resources
- In this Tissue Donation webinar hosted by the Les Turner ALS Foundation, Dr. Lyle Ostrow discusses the tissue donation process in detail.
- In this Demystifying Brain and Tissue Donation webinar hosted by I AM ALS, researchers and people living with ALS share information and perspectives.
- Target ALS has a brain and spinal cord donation program with centers in Phoenix, Washington, DC, New York City, San Diego, St. Louis, and Scotland.
- The NIH runs a nationwide tissue donation program that includes ALS. You can enroll through the Brain Donor Project.
- The VA ALS Biorepository Brain Bank is a tissue bank specifically for Veterans who have been diagnosed with ALS.
