Brain Donation for Professionals

If you are a medical examiner, coroner, death investigator, autopsy technician, funeral home director, or other autopsy professional, we welcome opportunities for collaboration on cases. Please reach out to Sophia Nosek at snosek@bu.edu or the on-call brain donation coordinator at 617-992-0615.  

To download a PDF copy of our Brain Donation Guide for Medical Examiners, Coroners, and Autopsy Professionals, please click here: Medical Examiner Brain Donation Brochure. 

For urgent brain donation matters, please call the BU CTE Center’s 24/7 voicemail/pager at 617-992-0615. Brain donation is a time-sensitive process, so we must be in touch with the legal next-of-kin or medical examiner as soon as possible around the time of death. Families are encouraged to express their intent to donate to the UNITE Brain Bank to coroners, investigators, medical examiners, and funeral directors.

For general brain donation inquiries, please contact:
Sophia Nosek at snosek@bu.edu

Family members of deceased athletes, military veterans, first responders, and more may donate their loved one’s brain, spinal cord, eyes, and blood after their death to the UNITE Brain Bank to be examined neuropathologically for evidence of CTE or other disorders of the central nervous system.  

The identity of donors is confidential and protected by both IRB rules and HIPAA laws. However, many donors have chosen to allow the CTE Center to release their names to draw attention to this important work. 

Brain Recovery Specialists

The UNITE Brain Bank is fortunate to collaborate with a network of highly-skilled independent specialists across the U.S. and Canada trained to carry out removal of the brain and other neural tissues. Recovery specialists are often willing to travel several hours to reach a donor. They are familiar with the UNITE Brain Bank protocols for confidentiality, consent, and brain removal.

Important Information for Current and Prospective Recovery Specialists:

  1. Contact: If you would like to be added to our database of recovery specialists, please send your resume, rates, and references to Sophia Nosek (snosek@bu.edu). If your contact information has changed, kindly call or email us to update it, so that we can easily reach you if needed.
  2. Requirements: Recovery specialists must be trained to carry out whole brain removal with no damage to the specimens using minimally invasive procedures. It is essential that the procedure does not alter a donor’s appearance in a way that would be incompatible with an open casket funeral. The UNITE Brain Bank has specific requirements regarding the timing, refrigeration of the body, brain removal, packaging, and shipment. We appreciate scheduling flexibility and availability after hours whenever possible, as well as willingness to travel to a donor’s location. Detailed instructions are provided by the on-call coordinator during the recovery process.
  3. Privacy and Confidentiality: Ensuring the privacy and confidentiality of brain donors and their families is critical. For this reason, we provide recovery specialists with secure means of communication with the UNITE Brain Bank. Informed consent is obtained remotely by the on-call coordinator from the next-of-kin/legal representative. A copy is securely forwarded to the recovery specialist and funeral home and/or medical examiner’s office prior to the procedure. We rely on specialists’ professional commitment to protect confidentiality in order to secure and protect these forms.

Funeral Directors

Funeral homes play an integral role in the brain donation process.

  • Funeral directors can help us identify potential brain donors by discussing brain donation with their patrons and referring interested families to our website to learn more.
  • Funeral directors can coordinate with the UNITE Brain Bank to make their facilities available for brain removal. They are the preferred facility for the recovery of specimens when a medical examiner’s office is not involved. However, there are different regulations depending on a donor’s state of residence.
  • Funeral home technicians, who are often trained to carry out brain removals, can work with the UNITE Brain Bank to perform this procedure.

To ensure a smooth donation process, our on-call coordinator must speak with a donor families’ funeral director of choice as soon as possible at the time of death. We also maintain a list of excellent funeral home partners by state and can make recommendations upon request.

Important Information for Current and Prospective Funeral Home Partners:

  1. Contact: If you are working with a family interested in donating to the UNITE Brain Bank, have questions about the process, or are interested in collaborating to assist with referrals or specimen recovery, please call our brain donation voicemail/pager: 617-992-0615.
  2. Facility Requirements: A preparation or embalming table is necessary for brain recovery, as is access to a body refrigeration unit or means to facilitate mortuary refrigeration to preserve brain tissue until the recovery procedure occurs. If patrons are interested in brain donation, please inform them of whether your facility meets the requirements listed above.
    • If your facility does not meet the necessary conditions for recovery, we ask you to inform the family and contact us to discuss a back-up plan. It may be possible for a nearby mortuary service to assist with recovery and/or refrigeration. If the family wants to have an open casket service, please assure them that brain donation will not interfere with their wishes, as incisions from the recovery process are minimal.
  3. Please Consider Suggesting Brain Donation to Families (Key Talking Points):
    • Brain donations are a unique and invaluable way to contribute to science and public health, and leave a positive legacy.
    • Our brain donation program includes the opportunity to join a supportive community of other donor families, called the Legacy Family Community, in conjunction with the Concussion Legacy Foundation (CLF). CLF is the leading organization on concussion and CTE advocacy, awareness, and education.
    • The UNITE Brain Bank covers the cost of brain donation.
    • Brain donation is compatible with an open casket funeral.
    • After brain donation, the donor’s family will receive a written report and informing call with the case neuropathologist.
  4. How You Can Help At The Time Of Death: Ensure that the decedent’s body is placed in refrigeration as soon as possible and not Timeliness is critical to the success of brain donation for research purposes, and as such, it may be necessary to perform recoveries off-hours. We will contact you to discuss scheduling.
    • If a funeral home staff member with appropriate training for brain recovery is not available, the UNITE Brain Bank will arrange for a recovery specialist to perform the removal. We will contact you to discuss logistics. Upon arrival at your facility, the specialist will need to use a preparation or embalming table for the recovery. Specialists will bring their own equipment and clean up after themselves.
  5. Costs: We are a non-profit, grant-funded organization and kindly request that you waive any facility fees so that we are able to help donor families realize their loved ones’ wishes for brain donation. We do not want families to be charged for any aspect of brain donation. If additional costs for a brain recovery need to be paid, please contact us to discuss them.
  6. Privacy and Confidentiality: Ensuring the privacy and confidentiality of brain donors and their families is critical. A copy of the brain donation consent form is securely forwarded to the funeral home prior to the procedure. We rely on funeral directors’ professional commitment to protect confidentiality in order to secure and protect these forms.

    Our Inclusion Criteria: 

    Inclusion criteria is based on two primary factors: (1) tissue quality and (2) head trauma exposure. 

    The UNITE Brain Bank researchers are dedicated to improving the understanding of chronic traumatic encephalopathy (CTE) and the long-term effects of repetitive head trauma through neuropathological examination. Work in pathogenesis, developing biomarkers for CTE, understanding risk factors, characterizing the clinical syndrome associated with the neuropathology, and eventually discovering treatments is ongoing. Populations of interest include contact sport athletes, veterans, victims of repeated physical violence (e.g. domestic and child abuse), first responders, and law enforcement. Populations of interest include contact sport athletes, veterans, young people without a history of head trauma, victims of repeated physical violence (e.g. domestic and child abuse), first responders, law enforcement, and individuals with severe traumatic brain injury.

    Learn more about the UNITE Brain Bank and our research here. 

    Tissue Quality: At least one intact hemisphere; preferably whole, uncut brain; sections adding up to one complete hemisphere; fixed within four days post-mortem with the body in refrigeration; no life support in the last month (unless ALS). We also encourage optional tissue donation of the spinal cord, blood, and CSF. 

    Autopsy Specifications: Brain in 10% formalin with brainstem and pituitary fixed for two or more weeks.  

    Optional: Blood and CSF refrigerated in 50mL centrifuge tubes, as well as the spinal cord. 

      We also welcome brain donations from 16 to 50-year-olds without a history of head trauma to use as controls in the study. 

      Consent: 

      We welcome collaborations and consultations on cases. However, we do require the written consent of the legal next-of-kin. The on-call brain donation coordinator will review the consent process with autopsy professionals and family members.

      Medical examiners receive a written neuropathology report provided 1-year post-mortem with written consent from next-of-kin.