Frequently Asked Questions

Our program is open to everyone. We accept post-mortem tissue at any age for a wide range of developmental, psychiatric, neurologic, and movement disorders. Additionally, we emphasize the importance of tissue donation from healthy individuals for comparison.

Once UMBTB has received and processed your forms, you will receive a letter confirming your registration. This is your letter to distribute and share as you see fit. You are not registered unless you have received a confirmation letter.

Once you have submitted forms to UMBTB, it can take up to 30 days for processing and for a confirmation letter to be sent. If the donor is near death or has passed, reach out to project coordinators by emailing btbdonors@som.umaryland.edu to notify us of the urgent status. We make no guarantees the registration can be expedited, but please let us know to see what we can do.

Medical records are required to donate tissue to research. Researchers need to have clinical notes, tests, and images when they are selecting tissue for their studies and to reference when doing their experiments. Additionally, UMBTB requires records from a licensed diagnosing and/or treating physician to confirm the donor does have a disorder. It is preferred that the donor/LNOK submits records to UMBTB. In some select cases, UMBTB will collect records on your behalf if the donor is unable to provide their own copies.

The registration process will be much more efficient if the donor/family can provide proof of diagnosis and treatment by a licensed physician when their registration is submitted. Records can be sent to UMBTB via:

Email: btbdonors@som.umaryland.edu
Fax: 410-706-2128
Or mailed:

655 W Baltimore St.
BRB 13-013
Baltimore, MD 21201

All records and personal information will be de-identified before tissue is available for research

We have a 24-hour viability window. It is recommended that you pre-register and share end-of-life arrangements so our project coordinators can work on logistical arrangements. Keeping UMBTB updated on any changes to the donor’s health, i.e., if they enter hospice or death becomes imminent, makes donation more favorable.

No, donation depends on many factors:

The availability of pathologists near the site of the deceased and or/the ability to arrange transportation to a recovery facility. UMBTB cannot guarantee that they will be able to find a pathologist or find affordable transportation within the viability window.

Donors can go through health changes or medical events that make them become ineligible to donate. 

UMBTB is not notified in time for a recovery to occur within the 24-hr viability window.

Legal Next of Kin (LNOK) will be contacted by UMBTB staff if a donation is unable to be completed for any reason

There is no cost associated with brain donation. UMBTB is responsible for all costs related to tissue donation.

UMBTB does not cover funeral expenses, including but not limited to any reconstruction fees.

UMBTB is federally funded. Part of these funds are used to cover the recovery expenses of donated tissue. UMBTB reserves the right not to move forward with recovery if the total cost exceeds a reasonable amount.

Choosing to participate in brain donation and going through the procedure will not delay funeral arrangements. Our coordinators will work with the funeral home and your family to ensure the procedure is completed in a timely manner.

The procedure will not alter the individual’s appearance in any way regardless of the funeral arrangements. There is no interference with the option to have an open casket.

*Some funeral homes may charge extra preparation fees depending on the services arranged with them. Please ask the funeral home directly if a donation will interfere with the services you plan. As stated in the above FAQ question, UMBTB is not able to cover any additional preparation or service-related charges. 

It is not possible to predict how soon the tissue will be used for research. Therefore, UMBTB is not able to track research results for tissue from a particular donor and provide those results to the family.

A neuropathology report containing the summary of findings from the examination can be provided to your family upon request at no additional cost. UMBTB aims to have this report sent out within 90-100 days of a donor’s passing. Please be advised, reports may take longer, occasionally up to a year, for the LNOK to receive them upon request. 

• Note: Neuropathology exam will NOT give you information on if the findings are hereditary/genetic.
• You or your LNOK must send a written request for a copy of the neuropathology report when submitting your forms. 

No, our program only recovers the brain and affected tissues

No, organ donation for medical purposes (organ transplant) does not include brain donation which is exclusively for research purposes. However, it is possible but not guaranteed to be both a brain AND organ donor.

No religions prohibit brain donation. However, we encourage you to discuss it with your spiritual advisor.

Yes, donors are de-identified and assigned unique identification numbers. The identity of the donor is retained by UMBTB.