This article, which appeared in the Fall 2011 Parkinson's Companion, is used with permission of Diane Church, PhD, Coordinator of the APDA Information & Referral Center of New Hampshire. Information in this article was used with permission from the Harvard Brain Tissue Resource Center, and adapted from their “Brain Donation Information for Neurodegenerative Disease” (brochure) and from their website: http://www.brainbank.mclean.org/. Contact information for Brain Banks in the northeast is provided at the end of the article.
Brain donation is a unique and valuable gift to the neuroscience research community. Moreover, it is the ultimate gift to future generations who will benefit from new tests, treatments, preventative measures and cures developed by researchers studying the donated brain tissue.
DID YOU KNOW?
- Only a tiny amount of tissue is used in most research studies. So one donated brain provides a large amount of tissue that can be used at institutions throughout the US and even the world!
- There is a critical need for brain tissue from persons who are normal as well as those with neurological disorders such as Parkinson’s. Normal control brain tissue is needed for comparison, to determine the differences between what is normal and what is not.
- Approximately 300 brains are donated to the Harvard Brain Tissue Resource Center (aka the Harvard “Brain Bank”) each year. Only 10%, or 30, of these are “normal.”
TYPES OF TISSUE DONATION
There are three distinct categories of tissue donation:
- The "body donor" donates the entire body for medical education; however, the brain must remain with the body and cannot be used for research.
- The "organ donor" donates organs for transplantation; however, the brain begins to decay immediately at death, and brain donation is generally not compatible with organ donation. However, each case is assessed individually at death.
- The "brain donor" donates the brain for medical research and, if interested, also has the option of donating eyes, skin, blood, or bone tissue.
AT THE TIME OF DEATH
To initiate the process of brain donation, call the Harvard Brain Bank at the time of impending death or immediately after the death of the donor. The Brain Bank representative will need the donor’s name, time of death, neurological diagnosis, and location. The Brain Bank will work directly with the Pathology Department at your local hospital to make arrangements for brain removal and provide donation instructions.
It is essential that the donation procedure occur within 24 hours from the time of death of the donor. Only the donor’s brain will be sent to the Brain Bank; the donor’s body will not be transported away from your local area.
THINGS YOU SHOULD KNOW
- The identity of each donor will remain strictly confidential.
- Religious groups including Protestant, Catholic, Jewish and other faiths support organ and tissue donation as a charitable gift of life consistent with the basic tenets of these faiths.
- The donation process involves a careful surgical procedure in which the body is not disfigured in any way. This procedure does not interfere with any funeral or burial arrangements – including an open casket.
- No fee is charged by the Harvard Brain Bank for transportation of the brain, neuropathological evaluation or other processing undertaken at our facility. However, the hospital pathology department where the brain is actually removed may charge a fee to the donor’s family for this service.
STEPS FOR A SUCCESSFUL BRAIN DONATION
If you are interested in brain donation we recommend the following steps:
- Have a family discussion about brain donation. Be sure your family members understand clearly your intention to donate.
- To register a potential donor, complete, seal and return the attached “Brain Donation Registration form. We will send a donor registration card in return.
- Make preliminary arrangements for brain removal through your physician or social worker. Send us the name and phone number of the hospital or pathologist that has agreed to perform the brain removal.
- When death is impending or at the time of death, call 1-800-Brain Bank (1-800-272-4622) and provide the following information:
- Complete name and age of donor
- Current location of donor
- Time and cause of death (if known)
- Neurological diagnosis
- Name, address, and phone number of legal next-of-kin (“Legal next-of-kin” is the spouse, or, if there is no spouse, then the adult children or parent of the deceased.) The legal next-of-kin will be required to sign a “Consent for Donation” following the death of the donor, which authorizes the donation of the brain to the Harvard Brain Tissue Resource Center for use in neurological research.
SOME EXAMPLES OF PARKINSON'S RESEARCH FINDINGS FROM DONATED BRAIN TISSUE:
Early 1900s: Various researchers described the pathological physiology of the Parkinson’s brain. In 1912, Friedrich Heinrich Lewy described brain cell loss and the inclusion bodies that now bear his name. In his doctoral thesis of 1919, Konstantin Tretiakoff linked the reduced number of pigmented cells in that substantia nigra with PD. He also coined the term, “Lewy bodies,” and noted their presence in the remaining cells of the substantia nigra.
Late 1950s: Using donated brain tissue, Arvid Carlsson discovered that dopamine is concentrated in parts of the brain that control movement. He then demonstrated that dopamine is an important neurotransmitter. When immobile, dopamine-depleted animals were treated with L-DOPA (or “levodopa,” which the brain converts to dopamine), they were quickly restored to full movement. Carlsson’s ground-breaking research led to the eventual approval of levodopa for treatment of Parkinson’s disease. He shared the 2000 Nobel Prize for Medicine for his discovery that lack of available dopamine in the human brain causes the symptoms of Parkinson’s disease.
Late 1990s: Alpha-synuclein, a protein, was found to be an abundant component of Lewy bodies found in degenerating neurons in Parkinson’s brain tissue. (Note that some familial cases of PD are associated with alpha-synuclein mutations, making the protein a “prime suspect” in the development of PD.) Why does alpha-synuclein accumulate and clump in Lewy bodies? Why don’t the cells get rid of it? Do Lewy bodies cause the death of brain cells or do they protect the nerve cells against something else? Each new research finding raises more questions.
Fast forward to August 2011: Researchers reported that alpha-synuclein in healthy cells is present in stable quartets (or “tetramers”) that are soluble and resistant to clumping. On the other hand, single-units (or “monomers”) of alpha-synuclein misfold and clump quite readily. If a treatment were developed that kept alpha-synuclein in soluble tetrameric form, would it be possible to prevent Lewy body formation? And if Lewy body formation were blocked, would it be possible to slow the progression or prevent symptoms of PD from developing in the first place?
1. Lewandowsky M and Lewy FH, 1912, and Tretiakoff, C, 1919, These de Paris, No. 293. Cited in: Holdorff, B, 2006, J Neurol, Vol 253, p. 677-678 and Bak TH and Lennox GG, in: Dementia with Lewy Bodies and Parkinson’s Disease Dementia, ed. O’Brien et al, 2006, p 1-7
2. Carlsson A, et al., 1958, Science, Vol. 127, No. 3296, p. 471
3. Carlsson A, et al., 1957, Nature, Vol. 180, p. 1200
4. Carlsson A, 2001, Science, Vol.294, No. 5544, p. 1021-1024
5. Spillantani MG, et al., 1997, Nature, Vol. 388, p 839-840.
6. Mezey E, et al., 1998, Molecular Psychiatry, Vol. 3, p. 493-499
7. Bartels T, et al., 2011, Nature, Vol. 477, p. 107-110
BRAIN BANKS IN THE NORTHEAST
Boston University Brain Bank (VA CSTE Brain Bank)
New York Brain Bank at Columbia University (NYBB / Taub Institute)
Columbia University Center for Parkinson’s and Other Movement Disorders