Frequently Asked Questions

We have included answers to frequently asked questions. If you have any further questions, please contact us at 843-792-7867.

What is the difference between “Organ” and “Research” donor?
If you are an organ donor in SC, your driver's license will have a small heart symbol in the corner. This choice helps extend the lives of others but does not cover all of your organs or specific research studies. Our donation program focuses specifically on research. A registered donor in our program empowers research in areas like age-related diseases of the brain, hearing, balance, smell and vision.

Who can register to become a research donor?
Anyone living in South Carolina that is over age 18 may register to be a research donor. A legal guardian must provide consent for those younger than 18. A legal Next of Kin will need to call our program and provide legal consent to complete your donation.

The following are a high priority donors needed in our program:

• Healthy individuals at any age.
• People experiencing hearing or balance (vestibular) loss, or loss of smell (anosmia) at any age.
• Those who are Asian, Black, Hispanic/Latino, Native American and/or Pacific Islander, including both healthy donors and those with dementia at any age.
• People diagnosed with non-Alzheimer’s dementias, such as Lewy body dementia, and frontotemporal lobar dementias such as Progressive Supranuclear Palsy or Corticobasal Degeneration at any age.
• Individuals diagnosed with early-onset Alzheimer’s disease.
• Individuals with Down syndrome, who are at higher risk for Alzheimer’s disease.
• People diagnosed with a neurodegenerative disease and have a family history.
• Participants in clinical trials and other research on Alzheimer’s disease and related dementias.

Potential donors should be aware that our brain bank may not be able to accept every brain donation. We must prioritize safety of our staff.

Who cannot be a donor?
Anyone with a history of specific contagious or blood-borne diseases, including active coronavirus, hepatitis, meningitis, tuberculosis, HIV/AIDS, or Creutzfeldt-Jakob disease (spongiform encephalitis). These conditions can create excessive danger for our team and future researchers.

Am I the legal Next of Kin?
The list below establishes the legal Next of Kin for a deceased love one in the state of SC, unless specified otherwise in a will.
1. Spouse > 2. Son/Daughter > 3. Parent > 4. Brother/Sister > 5. Grandchild > 6. Grandparent > 7. Legal Guardian

Does it cost anything to participate?
We do not charge registrants for participation in our program. MUSC will coordinate and pay for body transportation to our medical facility where the procurement occurs. A trained specialist will carefully remove the brain, temporal bones, nasal epithelium, and cerebrospinal fluid through the back of the head. We also take blood samples and the eyes for biomarker research. Our procedures do not affect a person’s appearance and a family may still have a viewing if they wish. MUSC will coordinate and pay for body transportation to a funeral home or crematorium anywhere within SC to carry out family arrangements.

How long does it take?
After a registered donation is initiated, we return the body to a funeral home or crematorium anywhere within SC within 72 hours. Usually the entire process takes less than 24 hours. A registered donor or their Next of Kin may request a rapid cremation at a local Charleston Crematorium (PDF).

What is an autopsy report?
During an autopsy, a group of specialists will examine the brain to determine the presence of any neuropathology, cancerous lesions, or other abnormalities. Sometimes we may find disease markers in healthy specimens from individuals that did not have symptoms during life. These individuals are of particular interest to researchers studying disease resilience. Once completed, we provide the family with a summary of all findings in an autopsy report. This reports offers some definitive answers to family members and helps match the donated specimens to the proper research studies.

What is genetic research?
The samples that are donated may be used for genetic research, which allows the study of genes. Researchers look for genes that cause or contribute to human diseases or traits. Part of the genetic research may be whole genome analysis, in which all or most of genes are analyzed. South Carolina state law mandates that genetic information obtained from this research be kept confidential and it cannot be shared with anyone except in the narrow circumstance of a research project that has been approved by an Institutional Review Board.

Is the information protected?
We take many steps to protect the identity of you, your family, and the decedent by deidentifying all samples and associated medical notes with anonymous codes. Identified information, including medical records, is never shared and is always protected in locked cabinets that are housed in a locked records room at MUSC. MUSC prohibits unauthorized entry into these rooms and maintains other security measures to enforce this rule. We cannot share genetic information obtained from donated specimens to the Next of Kin.

Where do I Get a Death Certificate?
The Carroll A. Campbell, Jr. Neuropathology Laboratory does not issue Death Certificates. The county where death occurred is responsible for issuing the death certificate. After a death certificate  is issued, it is then filed in the Vital Records Office of the South Carolina Department of Health and Environmental Control (DHEC). You can obtain official copies of a Death Certificate by applying to the DHEC Regional Vital Records Office responsible for the county where the death occurred. Vital Records contacts for various SC counties are found at the following links:
Vital Records Death Certificates in South Carolina
Vital Records Locations in South Carolina