Q: How do I register to become an Autism BrainNet donor?
You can make a profound difference to those who struggle with autism by registering yourself and/or family members as brain tissue donors. By registering, you declare your intent to donate brain tissue and make your wishes known to your family in a formalized way.
You may call Autism BrainNet directly at 1-877-333-0999 for more information.
Currently, Autism BrainNet only supports tissue donations within the United States.
Q: Is registration required in order to donate to Autism BrainNet?
No. Though we encourage everyone who is interested in becoming a brain tissue donor to pre-register, you do not have to pre-register in order to donate brain tissue to the Autism BrainNet. If a death occurs and you wish to begin the donation process, call our hotline at 1-877-333-0999. We can answer any questions you may have.
Q: Can family members and those not related to an autistic person register with Autism BrainNet?
Yes. For comparative studies, the Autism BrainNet needs brain tissue from the family members of autistic people and from those unrelated to anyone with autism.
Whether you are a family member of a person with an autism spectrum disorder, have autism yourself, or are unaffected and not related to anyone with autism, your donation can greatly affect our progress in understanding autism.
Q: What if a potential donor also has another health condition?
We understand that many potential donors with or without autism may have other health conditions. We will ask donor families to disclose such conditions so that we can consider them in connection with our research.
While the goal of the Autism BrainNet is to accommodate all interested donors, in the event that the health status of a particular donor does not meet the Autism BrainNet’s inclusion criteria, we will assist families in exploring other research program alternatives.
Q: Can an Autism BrainNet donor also be an organ donor or a whole body donor?
We encourage the donation of organs to save lives whenever possible, and Autism BrainNet donors can also be organ donors. The Autism BrainNet does not accept whole body donations.
If you are a registered organ donor, you should register separately for brain tissue donation through the Autism BrainNet. In any event, the donor’s family should call the Autism BrainNet hotline (877-333-0999) when a donor dies.
Q: Can I change my mind after registering with Autism BrainNet?
Yes. The decision to donate brain tissue is a very personal one, and you can withdraw your registration at any time.
Q: How can I ensure that my family and others know that I have registered with Autism BrainNet? Can I indicate my intention through MedicAlert?
The decision to donate brain tissue is an important one, and it is important to make your decision known to your family. If you have registered yourself or on behalf of a family member, you should also advise your other family members, clergy, physician, and attorney of the intent to donate to Autism BrainNet. You can also include status as an Autism BrainNet registrant on your and/or your family member’s advanced medical directive documents.
Autism BrainNet registrants who are also registered with MedicAlert can contact them at 888-633-4298, or visit their site at www.MedicAlert.org to update the registrant’s information to indicate that “in the case of death; please contact the Autism BrainNet at 877-333-0999 to donate brain tissue.”
Q: I am registered with the Autism Tissue Program-do I need to re-register with Autism BrainNet?
No. The Autism Tissue Program (ATP) is a legacy program of the Autism BrainNet, and past registrations with ATP are in Autism BrainNet’s system.