Brain Donation to Harvard Brain Tissue Resource Center, (HBTRC)
For comparative neurobiological investigations, brain tissue is being collected from:
- Normal individuals with no neurological or neuropsychiatric disorders
- Individuals diagnosed with certain neurobiological disorders
- Individuals diagnosed with schizophrenia or manic depressive illness/bipolar disorder. (see “Acceptable Diagnoses” below)
- Parents, siblings and offspring/children of individuals diagnosed with schizophrenia or manic depressive illness/bipolar disorder
Registering for a potential donation is easy! Any person 18 years of age or older can simply complete the "Secure Brain Donation Registration" and send it to the “Brain Bank.” Beyond registering, it is most important to inform your family that you are pre-registered for potential brain donation at HBTRC and make sure they know to call HBTRC (immediately) at the time of your death.
Whether donation is pre-planned/pre-registered or it is a last minute decision on the part of the family/Next Of Kin, it’s always best if the family has openly discussed the idea of donation in advance! This helps families to understand and be prepared to honor the donor’s wish, avoid misunderstandings and facilitates the donation process. At the time of the death of a potential donor, the Next Of Kin will need to be available to verify the donor's intent to donate and to provide “Postmortem Authorization for Brain Donation,” (Informed Legal Consent) to HBTRC.
An individual's body becomes the property of their estate at the time of their death. Although an individual can make a personal request to donate his/her brain (or even pre-register,) ultimately it is the surviving family members who have the privilege and responsibility of deciding whether this unique and valuable gift will be made. Please see Frequently Asked Questions (FAQ) for more information on consent hierarchy/authority.
ABOUT PRIVACY, COST AND FINAL ARRANGEMENTS:
- The identity of each: potential donor, actual brain donor and donor family will remain strictly confidential, in accordance with HIPAA Regulations and McLean Hospital policies.
- Brain donation does not conflict with most religious perspectives and will not interfere with a donor’s ability to be viewed/have an open casket or preclude embalming or cremation. Call 1-800-Brain Bank for a brochure outlining specific “Religious Perspectives.”
- With the exception of some “Special Collections” cases, a complimentary, diagnostic neuropathological report (brain “autopsy report”) is sent to the family and to the pathologist involved with the case.
- Limited funds are available to cover the primary costs of local brain removal and shipment to our facility. HBTRC cannot be financially responsible for: any additional transportation costs, “facility use” or other miscellaneous charges that may be imposed by the family’s funeral home or cremation service. Potential donors and donor families are encouraged to discuss these topics with your funeral professionals. You should let them know of your donation interest, find out whether or not such charges might occur and pre-negotiate your final arrangements accordingly.
- Normal Controls
- Psychiatric Disorders
Bipolar Disorder / Bipolar First Degree Relatives*
Borderline Personality Disorder
Depression / Depression First Degree Relatives*
Obsessive Compulsive Disorder / OCD First Degree Relatives*
Post-Traumatic Stress Disorder (PTSD)
Schizophrenia / SZ First Degree Relatives*
Traumatic Brain Injury (CTE)
*First Degree Relatives = Grandparents, Parents, Siblings, Offspring
- Neurological Disorders
Amyotrophic Lateral Sclerosis (ALS)
Corticobasal Degeneration (CBD)
Frontotemporal Dementia (FTD)
Huntington’s Disease / HD Relatives “at risk”
Lewy Body Disease (LBD)
Multiple Sclerosis (MS)
Multiple System Atrophy (MSA)
Progressive Supranuclear Palsy (PSP)
Seizure Disorder / Epilepsy
Traumatic Brain Injury (TBI or CTE)
- Neurodevelopmental Disorders
Fragile X Syndrome
Pediatric Developmental Disorders (PDD)
- Special Collections
Autism Spectrum Disorders / Autism in Family Members
(Autism Speaks www.autismspeaks.org)
(Dystonia Medical Research Foundation www.dystonia-foundation.org)
Tourette Syndrome / Tourette Syndrome Family Members
(Tourette’s Syndrome Association tsa-usa.org)
Restless Legs Syndrome
(Willis-Ekbom Disease Foundation www.rls.org)
(International Rett Syndrome Association www.rettsyndrome.org)
STEPS TO A SUCCESSFUL BRAIN DONATION:
- Have the family discussion about brain donation. Don’t forget to inform your health care providers and funeral professionals about your decision.
- It is preferable for you to register online but you may also call 1-800-BRAINBANK, (1-800-272-4622).
- Upon processing your registration, we can send a wallet-sized "Donor Card." Carrying this card is not necessary, legally binding and does not constitute legal consent but it may be helpful by informing healthcare providers of your interest.
- At the time of impending death and/or at death: call 1-800-BRAINBANK (1-800-272-4622) and be prepared to provide the following information:
A) Donor’s complete name
B) Current location of donor’s body, i.e. (hospital, nursing home, medical examiner’s office, funeral home…) and their respective contact info
C) Donor’s date of birth
D) Date, time and of death (if known) or the “last seen alive time” & death circumstances
E) Name, relationship, complete mailing address, address and phone number of legal next-of-kin
F) Donor’s neurological or psychiatric diagnosis (if applicable)
G) Donor’s race
H) Contact info for the funeral home or cremation service that the family will be using. If the decedent is not yet there, what time they are expected to be there?
Contact Us By:
- Calling 1-800-BRAIN BANK (1-800-272-4622)
- E-Mailing Us — Please do not send Protected Health Information (PHI), e.g. Name, Address, Social Security Number, Medical Record Number, Birth Date, Medications, Diagnoses, etc. via this portal or by unencrypted E-mail. Once your E-mail address and identity have been confirmed you may be invited to use a secure E-mail service for future correspondence.
Our Address: Harvard Brain Tissue Resource Center
115 Mill Street
Belmont, MA 02478