Post-Mortem Tissue Donation Program

To enroll or learn more about participating in the CBTTC Post-mortem Tissue Donation program, email postmortemdonation@cbttc.org or call 1-(833) 879-5983

Post-mortem Tissue Donation ProgramReceiving a diagnosis of an incurable brain tumor is an extremely difficult reality that no child or family should ever have to face. Donating brain tissue at the time of a child’s passing is a personal decision that is unique to each family. The CBTTC Post-Mortem Tissue Donation Program provides patients and families with the opportunity to advance cancer research through a simple donation process. Donating brain tissue allows researchers to better understand how brain tumors form, and it is crucial to discovering more effective treatments for children in the future. The gift of a post-mortem tissue donation benefits other children diagnosed with a pediatric brain tumor and can provide families with hope and consolation during a time of loss. For many patients, electing to donate brain tissue provides them with meaning by allowing them to be a partner in the research to help others with a similar diagnosis.

Without a critical mass of brain tumor tissue samples, scientists cannot fully understand how tumors behave and how to prevent them from forming. Understanding more about each unique tumor type allows doctors to prescribe specific treatments for each individual child based on their specific needs.  This helps to minimize the harmful side-effects of many currently-available treatments and increases the quality of life for children diagnosed with these diseases.

Each of the donated biospecimen samples are treated as precious resources. Every doctor, researcher and laboratory technician who processes or interacts with the tissue samples handles them with the highest level of respect and care.  The CBTTC recognizes that donating brain tumor tissue is a personal and emotional decision that is unique to each patient-family’s situation.

 

Why is the CBTTC Post-mortem Tissue Donation Program necessary?

Understanding the biological underpinnings of a brain tumor is a complex and delicate process. Researchers need samples of brain tumor tissue to better understand how brain tumors form and how they can be treated. As more tissue samples are collected, researchers are able to match more effective treatments to each patient.  Analyzing the entire brain after death allows researchers with the best opportunity to consider all of the factors related to the brain tumor.  This allows for a more comprehensive understanding of the tumor than is possible from a small tumor tissue biopsy sample collected at the time of diagnosis.

 

What is required to participate  CBTTC Post-mortem Tissue Donation Program?

The CBTTC Post-mortem Tissue Donation Program allows patients and family to empower pediatric brain tumor research. The decision to donate brain tumor tissue must be made before the death of a child.  Many families choose to be with their child at home, but in order to donate the tissue to the CBTTC, the following process need to occur:

 

Phone

 

Families must provide written consent to donate tumor tissue before the time of death

 

 

 

Clipboard

 

One phone call is made at the time of death to confirm donation

 

 

Within 24 hours, three different experts – an autopsy technician, a pathologist, and a research technician – must retrieve and process tissue for a successful donation. Patient families will never be charged for this service either directly or through their insurance providers. Once the tissue is processed, anonymous genomic and proteonomic data is cross-indexed and shared with other scientists throughout the consortium. This data is accessible to researchers all over the world for use in discovery efforts.

How will I learn about research findings using my child’s tissue?

Families can learn about genetic links from the published findings of CBTTC research projects. Patient families can consult with their doctor about participating in a clinical trial. Unfortunately, we cannot contact patients and families to provide results due to confidentiality restrictions.

 

To enroll or learn more about participating in the CBTTC Post-mortem Tissue Donation program, email postmortemdonation@cbttc.org or call 1-(833) 879-5983