Brain Bank Information

From the Spring 2000 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.

Below is a write-up from The Harvard Brain Tissue Resource Center (HBTRC) near Boston, MA regarding their protocol for brain donation.

The Illinois Chapter has been informed that Rush-Presbyterian-St. Luke's Medical Center in Chicago now has a Brain Bank. For information, contact Rush at 312/942-4500.

Please be sure to ask your neurologist if the facility he/she is affiliated with has a Brain Bank. You can then get information regarding the specific protocol and steps to take regarding brain donation at a facility that may be more convenient and closer to your home.

Harvard Brain Tissue Resource Center

There is a critical need for brain tissue from persons who are normal and those who have suffered with devastating disorders of the brain, such as Huntington's Disease, as well as from their family members. The importance of each individual brain donation cannot be stressed too strongly. The Harvard Brain Tissue Resource Center (HBTRC) collects tissue from both "normal" and neuropsychiatrically diseased donors. Normal, undiseased tissue is important to obtain, as one needs to establish normal ranges of value in order to detect what is abnormal in neuropsychiatric disorders.

Below you will find the answers to many frequently asked questions regarding brain donation.

1. What is the Purpose of Brain Donation?

A brain donation is a valuable gift. One brain can provide tissue for studies by numerous researchers throughout the U.S. as well as other countries.

2. Who Can Donate?

Any legally competent adult can donate his brain, just as they can donate any other organ. Those who are incompetent, or otherwise unable to sign, may provisionally donate through their guardian.

3. Are There Any Restrictions?

We cannot accept brain donations from persons who died while on a respirator for a period of time immediately prior to death or who suffered from highly contagious or neurologically transmissible diseases.

4. What About a Body Donation or Donation of Brain and other Organs?

Most medical schools do not accept body donations from persons who have donated any type of tissue.

5. What Special Procedures Must be Followed at the Time of Death?

It is important to have the tissue removed as quickly as possible, before embalming or other funeral preparations. If prior arrangements were made, the pathologist must simply follow our procedures for the removal of the brain. At this time we will arrange for transport of the specimen to our center.

6. Must the Donor Be Transported to the Brain Bank?

No. The brain is removed at a facility close to the place of the donor's death.

7. Who Will Remove the Brain After Death?

A local hospital will often carry out the autopsy. We suggest this be discussed with the potential donor's physician, who may be able to help make the arrangements with a local pathologist.

8. What Happens When the Donor Dies?

When a brain donor dies, the family or a member of the medical team should call the admissions office and the pathology department of the hospital to confirm that the brain is to be removed according to our protocol and sent to the Brain Tissue Resource Center. We should also be called and notified of these arrangements immediately via one of our 24-hour phone numbers (1-800-BRAIN BANK or 617-855-2400). Our protocol will be faxed to the pathologist if he/she does not already have it.

Steps to Take When Death Occurs

1. A member of the family or friend should IMMEDIATELY call the Brain Bank at (617) 855-2400 or 1-800-BRAINBANK, or if no answer (617) 855-2000. A delay in calling may result in the loss of the brain donation. To expedite the donation process, the caller should know the location of the deceased (i.e., hospital, funeral home).

2. It will be necessary for the next-of-kin or person legally responsible for the donor to give permission for the autopsy by phoning the switchboard of the hospital where the autopsy will take place and asking for the administrative officer responsible for receiving permission for autopsy by phone.

The Brain Tissue Resource Center is located in Belmont, MA, on the grounds of McLean Hospital. A few miles from Boston, McLean Hospital is a psychiatric hospital dedicated to the diagnosis, treatment, and research of neurological and psychiatric disorders. As an affiliate institution of the Massachusetts General Hospital and a teaching arm of Harvard Medical School, our location at McLean Hospital offers unique opportunities in the field of scientific research.

Our projects are funded through donations and grants from federal agencies as well as from public and private parties. We are a tax-exempt, nonprofit organization existing solely to serve the scientific community and families of our donors. Contributions from individuals are welcome and are tax deductible.

Please feel free to write should you have any further questions. Our toll-free, 24-hour number is 1-800-BRAIN BANK. In addition, (617) 855-2400 is monitored 24-hours a day and if there is no answer at either of these numbers, please call (617) 855-2000. We are pleased to assist you in any way we can.


The HDSA Illinois Chapter Board of Directors has authorized financial assistance to Donor families to offset costs which may be incurred with a donation.

The Chapter will reimburse costs the family incur up to $200.00. The family must submit paid copies of bills to Molly Simon, Illinois Chapter Treasurer, to receive this reimbursement. If you have any questions, please call the Chapter Office at (630) 443-9876.

Created and maintained by Renette Davis. Send comments to Renette by clicking here.

Created: July 4, 2000
Last updated: Nov. 28, 2010