FAQs – Brain Donation

A. It is very important to have a discussion now and let your family members know that this is your wish at the time of death. They will need to give their consent for the procedure to take place. So, we always recommend that you speak with your next-of-kin to let them know your wishes, so they are aware of the process and are willing to sign the required documents.

Yes, the BIOCARD Study team will ask you to complete a Registration Form for brain donation. This form would ask you some basic information about your next-of-kin (family members), and if you know of a local funeral home that you might use.

No, there will be absolutely no cost to your family. Because you have been enrolled in our study, we cover the cost of the brain examination. We will also cover the cost of transportation provided by a funeral home from place of death to the place where the brain donation will occur and then back again to the funeral home.

The procedure itself is fairly quick (about 1-2 hours), but timing may depend on the pathology staff case load. The funeral home will bring the body to Johns Hopkins and then come back to pick up the body after the procedure is completed. This should not affect most funeral arrangements.

No. Our studies focus on the brain, so a whole body autopsy is not done. If there is a medical reason you would want a whole body autopsy done, then it can be arranged. In that instance, the autopsy is not free of charge. We can get these details for you if that would be helpful. (Note the cost is currently about $2,000 but it is best to check this before quoting a price since costs can vary).

Yes, it is still possible to have an open casket. The pathologists take great care to be sure not to disfigure the body in any way, so that funeral services can take place as planned.

It is important to call the funeral home as soon as possible, since it often takes a while to make all the arrangements.

Your family will need to call the funeral home at the time of death. It is very helpful to select a funeral home in advance since they are key to the process and will provide transportation from place of death to Johns Hopkins Hospital and then back to their facility after the procedure. At the time of death, the next of kin will contact our Brain Resource Center so they can make all the necessary arrangements. They would also sign the Consent and HIPAA forms at the time of death and fax them to the Admitting Office at 410-502-5392. We have people on-call 24/7 because it is important to do this as quickly as possible. The next-of-kin will receive all of these details in a letter.

Yes, we arrange for brain donations by individuals who live all over the country. If you live more than 2 hours away, our staff will make arrangements with a local hospital or Pathology group where the brain donation can take place. If you live within a 2-hour distance from Baltimore, then the brain donation would happen at Johns Hopkins Hospital.

There are two required forms that must to be signed at the time of death. These forms must be signed the next of kin. These forms are:
(1) Consent Form: The next of kin must sign the Consent for Post-Mortem Examination (Autopsy) at the time of death.
(2) HIPAA Form: The next of kin must also sign a form called Acknowledgement of Receipt of Privacy Practices (HIPAA form).
Note: these forms cannot be submitted via email, they must be FAXED.

If the brain removal will be done at Johns Hopkins, the forms must be faxed to the Johns Hopkins Admitting Office at 410-502-5392.

If the brain removal will be done elsewhere, the HIPAA form should be signed in advance and faxed to the Johns Hopkins Brain Resource Center at 410-955-9777. Each institution has their own Consent Form and this form must be signed and sent to that institution.

Note: A death certificate is not required for an autopsy to take place. The funeral home will provide the death certificate to the relevant institution sometime after death.

The report may take up to three months to be completed. If the brain donation takes place somewhere other than at Johns Hopkins Hospital, then it may take longer. Our study staff will send the report to the family by mail. If the family has any questions after receiving the report, a member of the study team will talk with them to explain the findings.