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MIND Institute Brain Endowment for Autism Research Sciences<sup>®</sup>

MIND Institute Brain Endowment for Autism Research Sciences®

FAQs


Who should I contact if I am interested in obtaining general information about the BEARS Tissue Program
®?

Please call our 24-hour toll-free number at 855-221-HOPE (4673) and select the appropriate call forwarding option. A member of the BEARS ® staff will answer any questions you may have about the program.

How soon should I call after a potential donor passes away and the family or caregiver decides to donate to the BEARS Tissue Program ®?

As soon as possible.
The speed and precision of the tissue transport process is critical because as time passes between death and adequate preparation of brain tissue, fewer and fewer types of studies are possible with the tissue. You can call our 24-hour toll-free number at 855-221-HOPE (4673) to speak with the program coordinator and express your interest in donating brain tissue.

Do I have to pre-register to be a brain tissue donor?

No. Though we encourage everyone who is interested in becoming a brain tissue donor to pre-register for our program, you do not have to pre-register to become involved with a brain tissue donation process. If a family member experiences the passing of someone close and wants to donate, he/she can start the process anytime by calling us at our 24-hour toll-free number at 855-221-HOPE (4673) without prior registration. 

Who should I contact if I am interested in making an imminent donation?

Please call our 24-hour toll-free number at 855- 221-HOPE (4673) and select the appropriate call forwarding option.  Our program coordinator will answer any questions you may have and make arrangements to initiate the brain tissue donation process.

 What information will I have to provide if I am interested in making a brain tissue donation for a child, spouse, or family member that has passed away? 

When a family member or caregiver contacts us, we will need to gather preliminary donor information, such as the donor’s name, age/date of birth, and the time he/she passed away. We will need additional information regarding:

1) The caller’s relationship to the donor.
2) The address, phone number, and fax number of the hospital or mortuary where the donor is currently located.
3) The name of the donor’s parent(s)/guardian, spouse, or person with legal authority to complete the  BEARS ® brain donor consent form (PDF). We will also need this person’s phone number and e-mail address or fax number.

What forms would I have to fill out for brain tissue donation?

1) The BEARS ® online brain donor registration form: This form will allow us to collect prelimilary information on the donor and his/her family or caregiver. It can be completed as soon as you decide to become a brain tissue donor or anytime before a brain donation event takes place. The form can also be obtained online on our website under Register now or How to register.

If you cannot access the BEARS ® online brain donor registration form, you can choose to complete the PDF version of the BEARS ® registration form (PDF) by directly typing in your information, saving, and then e-mailing the document  to us at: MINDBEARS@ucdavis.edu.

2) The BEARS ® brain donor consent form (PDF): This form will give us authorization to retrieve the donated brain tissue, obtain the donor’s health information for research purposes, and share the brain tissue among researchers that we currently collaborate with.

The BEARS ® brain donor consent form needs to be faxed to us at 916-703-0483. If you do not have access to a fax machine, you can choose to complete the PDF version of the consent form and e-mail it to us at MINDBEARS@ucdavis.edu. We will need to receive this form before any arrangements can be made to carry out the brain tissue donation process. 

3) BEARS ® online brain donor questionnaire: This form will help researchers obtain a complete and accurate profile of the donor’s personal and medical background. The questionnaire can be filled out after the donation, preferably within 2 months. It can then be faxed to us at 916-703-0483 or e-mailed to MINDBEARS@ucdavis.edu.

If you cannot access the BEARS ® online brain donor questionnaire, you can choose to complete the PDF version of the questionnaire (PDF) by directly typing in your information, saving, and then e-mailing the document  to us at: MINDBEARS@ucdavis.edu.

Who do I contact if I need help filling out the forms?

Call our 24-hour toll-free number at 855-221-HOPE (4673) to speak with the BEARS ® staff or e-mail questions to MINDBEARS@ucdavis.edu.

Who has legal authority to fill out the BEARS ® brain donor consent form?

The final choice of brain tissue donation is made by the donor's next-of-kin, which is legally defined in this order:

1) The surviving spouse or registered domestic partner 
2) Surviving child or parent
3) Surviving sibling
4) Other surviving kin or guardian
4) Agent under a durable power of attorney for healthcare
5) A public administrator, coroner, or other authorized public officer

Please note that registering to become a brain donor with the BEARS Tissue Program ® does not make brain tissue donation automatic at the time of death. Since brain removal is an autopsy procedure, the BEARS ® brain donor consent form (PDF) must be completed and submitted by one of the above listed individuals, at the time of death, in order for the brain tissue donation process to proceed.

What happens to the donor’s brain tissue after I consent for donation?

The BEARS Tissue Program ® will work with a pathologist within your area to retrieve the donated tissue. It will then be transferred to our research facility at the MIND Institute, where brain research is being conducted.  The brain tissue will also be provided to scientists conducting research across the nation and around the world to ensure as much knowledge as possible is gained from each donation.

What steps are usually taken to carry out the entire brain tissue donation process?  

1) A family member or caregiver calls the BEARS Tissue Program ® immediately after the potential donor passes away, or if death is imminent, using our 24-hour toll-free number: 855-221-HOPE (4673).

2) The BEARS ® brain donor consent form (PDF) is filled out by the family member or responsible caregiver, and then e-mailed to MINDBEARS@ucdavis.edu, or faxed to 916-703-0483.

3) The BEARS ® staff will arrange for the pick-up and transportation of the tissue with a pathologist within your area.

4) A family member or caregiver fills out the BEARS ® online brain donor questionnaire.

5) The BEARS ® staff will schedule a follow-up visit for a clinical social worker to come and administer the ADI (Autism Diagnostic Interview) or other clinical interviews relevant to the medical history of the affected donor. Follow-up visits can also be scheduled on a case-by-case basis for unaffected or controlled brain tissue donors.

This follow-up visit can be conducted in the home or at a more convenient location for the family member or caregiver. Any additional medical/clinical records relating to the donor, are appreciated and will also be collected during this visit.

What types of clinical/medical documentations will the clinical social worker need to collect during the follow-up visit?

The clinical social worker will generally ask to collect the following information for each donor during a follow-up visit:

1) Autopsy report
2) Medical records (includes MRIs, Immunization, etc.)
3) Neuropsychological evaluations (IQ or any psychological/behavioral evaluations, ADOS, etc.)
4) Audiological evaluations
5) Educational evaluations
6) Speech-language evaluations
7) Case history information (including family pedigree chart)
 
The above listed records will be used to generate an accurate summary report for research purposes. 

How can the family member or caregiver retrieve the donor’s medical/clinical records?

Contact the donor’s doctors, medical examiners, clinical therapists, residential care facilities, etc. to request for relevant medical/clinical records. You will need to fax the BEARS ® brain donor consent for (PDF) to the contacted health-care professional before he/she can release any health records belonging to the donor.

Will donating brain tissue affect our funeral arrangements?

No. You will not have to make any changes to your funeral arrangements. The brain tissue donation process will not delay your arrangements and does not interfere with having an open casket or any traditional funeral arrangements.

Will there be any costs for participating in the BEARS Tissue Program
®?

No. Donors and their families will not incur any costs for participating in this program. We will pay for any procedures directly related to the brain tissue donation process.

What are the benefits of donating brain tissue?

You will be giving researchers one of the most valuable resources to study neurodevelopmental disorders at a cellular and molecular level. A better understanding of neurodevelopmental disorders, such as autism, can increase our ability to diagnose autism, produce new treatments, and ultimately find a cure.

What types of research are being conducted with the donated brain tissue?

Donated brain tissue will benefit collaborative multidisciplinary research at the MIND Institute and around the world, using advances in neuroscience, molecular biology, genetics, pharmacology and behavioral sciences, to further understand brain function.

The MIND Institute has an exceptional team of healthcare professionals and scientists working together to find treatments for neurodevelopmental disorders, such as Autism Spectrum Disorders, Down Syndrome, Tourette Syndrome, Fragile X Syndrome, and Chromosome 22q11.2 Deletion Syndrome.

Will someone be contacting me when the donation process is complete?

Yes. You will be notified when the donation process has been completed. In addition, approximately one month following donation, a member of the BEARS ® staff will contact you to collect the questionnaire.

If applicable, the BEARS ® staff will also arrange a time for you to speak with our licensed clinical social worker. This can be done through a home visit or a phone conversation, where diagnostic or healthcare information will be collected and used for research purposes.