Why is autopsy tissue donation important?
The precious gift of your child’s autopsy tissue will empower research so breakthroughs can be made and a cure can be found for this devastating disease. In addition, a donation can be an important first step a family makes toward healing.
Who do I talk to about making an autopsy tissue donation?
To speak to someone about autopsy tissue donation, please call 1-844-456-GIFT or send questions to info@GiftfromaChild.org. You will be connected to a tissue navigator from the Children’s Brain Tumor Tissue Consortium (CBTTC). The navigator can answer any questions you have, and facilitate your child’s donation.
When do I have to decide about choosing to donate?
Written consent must be given prior to the child’s death and the greater amount of time the tissue navigator and medical team have to prepare, the higher the likelihood of a successful donation. Where you are located in the country can effect the amount of time needed prior to donation. Please discuss with a Tissue Navigator. 847-456-GIFT
What is a tissue navigator?
Tissue navigators are trained to companion families through the donation process. They will answer your questions and should you choose to donate your child’s tissue they will coordinate all aspects of the donation. If you have to leave a message a navigator will return your call within 24 hours.
What arrangements need to be made in preparation for autopsy tissue donation?
Once you have decided to donate it takes only two steps: sign a consent form before the time of death and one phone call at the time of your child’s death.
What is the cost of donating autopsy tissue?
There is no additional cost to you or your family. Your donation is a gift that makes research possible. You will still have the funeral expenses you would otherwise have had without a donation.
Will my child look the same after the autopsy? Can we have an open casket?
Yes. You can have an open casket and you will not be able to tell that an autopsy has been performed. We recommend that you talk to the tissue navigator and your oncologist to confirm that this will be true for your child.
Can I choose an autopsy donation if my child dies at home?
Yes. If your child dies at home your funeral home will transport your child to the autopsy site and then back to the funeral home. In many cases, the autopsy is conducted at the funeral home.
How soon after death does the autopsy tissue donation need to happen?
You can stay with your child for as long as you wish after his or her passing. While many researchers prefer tissue donated within 24 hours, they also understand that your family’s needs come first.
How long does it take to perform the autopsy tissue donation?
It takes only a few hours. Even for families who wish to hold the funeral as soon as possible, timing is generally not an issue.
Can I change my mind about donating autopsy tissue?
Yes. You can change your mind at any time.
Can I choose where the tissue will go?
Yes, if you are interested in choosing where your child’s tissue will go, the tissue navigator will assist you. Please note it is usually possible to send tissue to more than one researcher.
Where will my child’s tissue be sent?
To any lab(s) your family chooses. Additionally, Gift from a Child seeks to direct families to researchers who have the interest and expertise to work with autopsy tissue and the desire to share the data widely across the research community. There are four Centers of Excellence GFAC has partnered with.
What are the Centers of Excellence?
They consist of four labs affiliated with the CBTTC. Tissue Navigators from each of the labs work together to facilitate donations throughout the country. Each of these labs has the expertise to process a whole brain donation as well as develop cell lines and mouse models from the tissue. A portion of autopsy tissue donated to any of these labs will be stored at CBTTC’s biorepository in Philadelphia.
Where are the Centers of Excellence?
Children’s Hospital of Philadelphia
CBTTC Operations Site
Executive Board Chair: Angela Waanders, MD
Children’s National, Washington DC
Lead Investigator: Dr. Javad Nazarian
Lurie Children’s Hospital, Chicago, IL
Lead Investigator: Dr. Xiao-Nan Li
Stanford University Medical Center
Lead Investigator: Dr. Michelle Monje
What is the Children’s Brain Tumor Tissue Consortium?
CBTTC is currently the planet’s largest pediatric brain tumor database, including tissue and genomic data. It offers open-access, freely available data to researchers around the world. CBTTC is made up of seventeen children’s hospital throughout the world.
Visit the CBTTC site
It’s not my child, but how can I help?
Although you cannot consent for the child’s donation, you can gather information and present it to the parents and child (if appropriate) in a loving and caring way. All the information you need is on this website but if you still have questions, call the number on the learn more button.