How brain tissue donation works?
The MIND Institute Brain Endowment for Autism Research Sciences (BEARS)® Program is grateful to the donors and their families whose commitment and generosity will make a positive impact in the field of brain research in years to come.
Although the brain tissue donation process can be a very distressing time, numerous donor families have expressed that their single act of donation has helped them in their grieving process. While choosing to donate brain tissue cannot take away their pain of loss, it does provide them comfort to know that their contribution can drastically improve the lives of others in the future.
When a potential donor passes away, it is important for the family member or caregiver to contact the BEARS® Tissue Program as soon as possible, preferably within 24 hours from the time the donor passes away, at our 24-hour toll-free line: 855-221-HOPE (6473). Since brain tissue is extremely fragile and degrades quickly, it is critical for the tissue recovery and transport process to occur within this 24-hour time frame. As more time passes between death and adequate preparation of brain tissue, fewer and fewer types of research studies are possible with the donated tissue.
The following is meant to provide potential donors and their families/caregivers with a general idea of how the brain tissue donation process works.
Making the decision to donate brain tissue for autism research
- It is generally helpful for family members or caregivers to discuss the possibility of brain tissue donation with potential donors or with each other before the donor passes away. Although this experience can be very emotional and overwhelming, it does help for family members to share their thoughts and feelings with one another, and make the appropriate arrangements before the time comes.
- Learn more about our program and register if you haven't already done so.
- Call our 24-hour toll-free number at 855-221-HOPE (4673) to ask questions or express any concerns you may have regarding the brain tissue donation process.
Initiating the brain tissue donation process
- The family or caregiver should inform the health care provider, medical examiner, or nurse of his/her wish to take part in a brain tissue donation program. He or she may need to remind the doctor immediately after the donor passes away that arrangements have been made for a brain tissue donation.
- The family calls the BEARS® Tissue Program's 24-hour toll-free line: 855-221- HOPE (4673). The caller should select the “imminent donation” option to speak with our program coordinator who will then initiate the brain tissue donation process.
- When calling the BEARS® Tissue Program , be prepared to provide some preliminary questions regarding the donor, such as age, location, time of death, and contact information of a guardian or person with the legal authority to sign the BEARS® brain donor consent form (PDF).
The BEARS® staff will work to find the most efficient way for you to obtain and complete the BEARS® brain donor consent form (PDF). Once we receive the completed form, we will then work with local pathologists, mortuaries, hospitals, etc. to initiate the brain tissue donation process.
After the initial brain tissue donation call
- The BEARS® staff will facilitate the brain tissue donation process by working with the donor’s doctor, family funeral director, local pathologist, an other healthcare professionals to ensure efficient and proper transport of the donated brain tissue.
If the donor passes away in a hospital, it is best to inform the hospital about the brain tissue donation before the donor gets transferred to the funeral director’s premises. If the person passes away at home or in a nursing home, the funeral director can liaise with the BEARS® staff and a local pathologist to make arrangements for the brain tissue donation.
- The BEARS® staff will work with a pathologist within your area to dispatch skilled and trained lab technicians to transport the donated brain tissue to a temporary facility where it can be properly prepared and preserved. If possible, it is crucial that this process occurs within 24 hours from the time the donor passes away to ensure that the tissue remains in optimal quality for research.
- The donated tissue will then be transferred to the research facility at the MIND Institute, where brain research is being conducted. The brain tissue will also be shared with scientists conducting research across the nation and around the world to ensure as much knowledge as possible is gained from each donation.
- The BEARS® staff will schedule a follow-up visit for a clinical social worker to come, collect the donor’s medical records and learn more about the donor’s background. The follow-up visit can take place in the home or at another location that is more convenient for the family or caregiver.
Preparing for the follow-up visit
- The BEARS® staff will contact the donor’s family or caregiver to schedule the date, time and location for the follow-up visit.
- Come prepared to answer questions pertaining to the donor’s behavioral or medical history. The clinical social worker will administer the autism diagnostic interview for donors that had been diagnosed with an Autism Spectrum Disorder and will answer questions you may have regarding the BEARS® online brain donor questionnaire.
- It would be helpful if the family or caregiver can arrange to retrieve the donor’s medical records before the clinical social worker visits.
Some records that our clinical social worker would like to collect are:
1) Autopsy report
2) Medical records, such as MRIs and immunizations
3) Neuropsychological evaluations, such as donor’s IQ chart or psychological/behavioral evaluations
4) Audiological evaluations
5) Educational evaluations
6) Speech-language evaluations
7) Case history information, including a family pedigree chart
The clinical social worker can also help the family/caregiver complete the pedigree activity or any component of the BEARS® online brain donor questionnaire during the follow-up visit or phone call.
The BEARS® staff will ensure that the entire brain tissue donation process is properly carried out, and will serve as a source of comfort and support for donor families. We can be contacted anytime at our 24-hour toll-free line, 855-221-HOPE (4673), or through e-mail, firstname.lastname@example.org, to answer questions or concerns you may have after the brain tissue donation process.