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Human Brain Collection Core

For Families

Mission: The mission of the Human Brain Collection Core (HBCC) is to learn about the causes and mechanisms of mental illnesses, which are brain diseases. To be able to conduct this research, we obtain brains from deceased individuals with and without mental illness. The results will help researchers develop new therapies and preventive strategies.

Sources of Donated Brains: We obtain brains through the Offices of Chief Medical Examiner (OCMEs) of Virginia and the District of Columbia. Our personnel are notified of potential donations by OCMEs. We then contact the next-of-kin of the decedent to obtain consent for donation of the entire brain and a blood sample. Our personnel audiotape the next-of-kin’s consent as an official record of the donation. Only after obtaining consent, we arrange with the OCMEs to collect the donated brain. There is no cost to the next-of-kin or the decedent’s family. There is no direct benefit to the family for allowing the donation. The donation is strictly voluntary.

Confidentiality: We protect the confidentiality of the decedent by removing his/her name and all identifying information from any materials we receive.

Characterization: To confirm diagnosis, we try to obtain further information about the decedent’s medical and psychiatric history through interviews with the family and released medical records after obtaining written authorization from the next-of-kin. We will accept a donation even if the next-of-kin does not wish to answer follow-up questions. Because of the ongoing nature of the studies, we do not provide any individual research results to the next-of-kin or the families or comments about the cause of death. The families should contact the OCMEs directly if they have further questions about the decedent.

All our procedures are approved by the Institutional Review Board (IRB) (protocol #17-M-N073).

Our Research: We and our approved collaborators conduct a vast array of research studies on the neurobiological processes in the brains of people with and without mental illness. We use modern techniques, such as RNA and DNA sequencing, to examine molecular composition of tissues and cells in various brain regions. Visit the section FOR RESEARCHERS if you wish to obtain more information about our research.

Answers to Frequent Questions from the Families:

Q: If we donate our loved one’s brain will we still be able to have a viewing / open casket?
A: Yes, the medical examiner’s procedure is done in a way so that it will not change or affect the appearance of the deceased.

Q: If I agree to the donation, will that delay the returning of the deceased’s body to me or release to the funeral home?
A: No, there will be no delay as compared with the routine autopsy procedure. The donation process happens very quickly on the same day as the autopsy.

Q: Will donating interfere with the investigation of the cause of death?
A: No, our procedures will help with the investigation. We perform a full neuropathological examination of the donated brain.

Q: Will we receive any report on your findings?
A: Yes, we will generate a report of our examination and provide it to the medical examiner to be included as part of their final autopsy report. Our full report is available through the medical examiner approximately 3 months after the date of donation.

Q: Does your contacting us mean the deceased individual had a mental illness or died by suicide or drug overdose?

A: No, our call to families of the deceased does not imply any specific medical history or cause of death. The OCME refers all individuals to us who pass away suddenly. Only the OCME can provide details on the circumstances and cause of your loved one’s passing.

Links to support groups: If you need help, please visit these sites:

The National Alliance for the Mentally Ill (NAMI) provides educational resources and events, statewide outreach, advocacy and affiliate organizational support. Also, free training for grassroots programming in county-specific communities, including free educational classes, support groups, presentations, and resources to all affected by mental illness, including individuals living with mental illness as well as family members/caregivers of individuals living with mental illness.

The Substance Abuse and Mental Health Services Administration (SAMHSA) is the agency within the U.S. Department of Health and Human Services that leads public health efforts to advance the behavioral health of the nation. SAMHSA's mission is to reduce the impact of substance abuse and mental illness on America's communities.

Recovery.org aims to connect people and their families with the information and resources to help them recover from substance abuse and behavioral disorders. It’s a private resource which does not receive funding from any state or government programs, working instead with some of the country’s most respected treatment organizations who support and sponsor Recovery’s efforts.

Addiction Center is a professional web guide that connects individuals struggling with addiction to treatment options. Over 20 million people in the United States suffer from addiction, and an estimated one hundred people die from drug overdoses daily. Addiction Center provides families and communities with helpful information on substance abuse, addiction and recovery options.

The National Suicide Prevention Lifeline is a 24-hour, toll-free, confidential suicide prevention hotline available to anyone in suicidal crisis or emotional distress. By dialing 1-800-273-TALK(8255), the call is routed to the nearest crisis center in our national network of more than 150 crisis centers.

StartYourRecovery is a free, confidential resource developed with the input of leading clinicians, experts from the White House and SAMHSA, and from people in recovery. The website helps individuals take steps toward a healthy relationship with drugs and alcohol, learn about the experiences of others and find the answers for recognizing and dealing with substance use issues.

Wendt Center for Loss and Healing (Washington, DC area) With nationally recognized expertise, the Wendt Center for Loss and Healing is a premier resource for restoring hope and healthy functioning to adults, teens and children who are coping with grief, loss and trauma in the Greater Washington region.