Our understanding of autism today is based largely on the generosity and foresight of families.  Those families who made the decision to donate brain tissue for research during a very difficult time in their lives, when a family member has died.

In the event of death, a family member or health care worker will need to contact the ATP at (1-877-333-0999) to coordinate the donation.  Before the surgical process of donation can occur, the Next-Of-Kin is consulted and the process is fully explained and discussed with the family, by either an ATP or HBTRC advisor.  This process of obtaining formal and knowledgeable approval from the Next-Of-Kin is referred to as “informed consent”. 

Should you choose to become an ATP registrant, and wish to donate your brain to the ATP in support of autism research, we encourage you to inform others of your wishes, including your immediate and extended family.  Helping your friends and family learn more about the ATP and its mission will help them understand your unique choice.

But how does this process work? 

The following is a step-by-step description of the process of brain donation.  Currently, the Autism Tissue Progam only supports tissue donation within the United States, Canada, and the United Kingdon.

• The family informs the health care provider or Medical Examiner/Coroner of their wish to make a donation.
• The family or health care provider calls the ATP 24hr hotline (1-877-333-0999) and specifies that they are calling regarding an impending brain tissue donation.  This initiates the process of donation.†
• The Harvard Brain and Tissue Resource Center (HBTRC), the repository for the ATP brain tissue collection, is immediately notified of the impending donation.
• An HBTRC advisor will be immediately connected with the family or call the family directly and guide the donating family through the donation process.
• An ATP advisor is notified of the impending donation.
• An ATP or HBTRC advisor will work with the family to complete the consent process.
• The HBTRC technicians at Harvard begin preparing for the arrival of the donated tissue.
• The Medical Examiner/Coroner conducts the procedure.
• A courier arrives at the Medical Examiner/Coroner office to transport the recovered tissue directly to the HBTRC.
• Within 24hrs† the tissue is received at the HBTRC.
• Skilled technicians at the HBTRC initiate a lengthy process that can extend to 6 months, to properly preserve and prepare the donated tissue for research.
• An ATP clinical counselor will contact the donating family and schedule a personal meeting, at their convenience, regardless of location, to acquire medical information on the donor. ††

† If calling from the United Kingdom, your call will be transferred to our UK affiliate at Oxford and they will guide you through an analogous process.

†† The speed and precision of this process is critical.  Brain tissue is extremely fragile and degrades quickly.  It is not only absolutely crucial that the tissue is properly cared for in its transport, but that it arrives at the HBTRC for processing within 24 hours to insure its integrity.  The ATP goes through great expense and effort to insure that the donated tissue that has been entrusted to our program is treated with the utmost care.