NEW YORK PRESBYTERIAN/WEILL CORNELL MEDICINE IS ONE OF FIVE REGIONAL CENTERS OF EXCELLENCE IN THE GIFT FROM A CHILD DONATION PROGRAM

The diagnosis of an incurable brain tumor is an inconceivable challenge that no child or family should have to face. This impossible situation is the driving force behind the Children’s Brain Tumor Project. In the laboratory, in clinical trials, and through vast data-sharing networks including the Children’s Brain Tumor Network (CBTN), we are working hard every day to achieve a single goal: bringing hope to the hundreds of patients and families each year who confront the heartbreaking diagnoses of rare and inoperable pediatric brain tumors.

In 2019, Weill Cornell Medicine was named a Regional Center of Excellence in the Gift from a Child program, a national initiative designed to increase access to post-mortem pediatric brain tissue donations through advocacy. Gift from a Child was designed by families who have endured the loss of their own children, ensuring that all donations are handled with the utmost care and that the wishes of participating families are prioritized.

Each donation allows collaborating researchers around the world to gain a wealth of invaluable information through molecular, cellular, and genetic analysis of the tissue. It is this information that is so essential to creating a brighter future for the children and families that this disease so greatly affects. The desperate need for tissue samples via rapid autopsy led us to participate in the Gift from a Child program. As a designated Center of Excellence, we are a regional site for coordination, processing and storage of donated tissue. The centers work as a collaborative and example of best practice in family and patient care.

We realize the decision to donate your child’s brain tissue from rapid autopsy is multifaceted and highly emotional, and requires reflection and preparation. We hope we can provide any information and guidance you may need in the process. Most important, we admire your strength in these difficult times. Together we will work toward changing the future of this devastating disease.

Sincerely,

Dr. Jeffrey Greenfield and Dr. Mark Souweidane

Co-directors, Weill Cornell Children’s Brain Tumor Project

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FREQUENTLY ASKED QUESTIONS

A rapid autopsy is a way to procure tumor tissue quickly from both primary and metastatic sites (when applicable) before the tissue quality has degraded. Such rapid procurement improves the quality of advanced tumor analysis and permits an abundance of information to be extracted from tissue.

You can stay with your child for as long as you wish after his or her passing. While we prefer tissue donated within 6 hours, we also understand that your family’s needs come first. Once started, the procedure will typically take two to four hours to complete.

If nearby, the autopsy is most often performed in a state-of-the-art autopsy facility within Weill Cornell Medical College. The procedure will involve attending pathology faculty, pathology residents, experienced autopsy technicians, and research tissue procurement personnel. If you do not live near our facility, we will help you coordinate this process with your local hospital, pathology department, and funeral home.

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.

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 currently five Centers of Excellence GFAC has partnered with, including Weill Cornell.

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.

No. A well-planned brain autopsy will not delay or interfere with a family’s funeral plans. You may have any sort of service or remembrance that you and your family wish. The autopsy is done discreetly and does not cause any change in the donor’s outward appearance.

While it may be overwhelming and emotional, it is important to try to begin making plans for tissue donation as soon as possible. Ensuring that all details are coordinated prior to death will prevent stress during a very difficult time.

You may withdraw from the donation program at any time. All you need to do is contact our office and inform us of your decision.

They consist of five labs affiliated with the CBTN. 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 CBTN’s biorepository in Philadelphia.

Gift from a Child has assigned a designated 24-hour hotline. Someone is always available to help you with any questions and coordination.

Telephone: 844-456-GIFT
Email: neurosurgery-legacy@med.cornell.edu or info@giftfromachild.org.

PROGRAM ELEMENTS

THE STUDY:

When a family makes a legacy donation, researchers are able to study a tumor in several different ways, including microscopic analysis and genomic sequencing. Each tumor can provide an astonishing amount of data, all of which can be invaluable to researchers.

THE ANALYSIS:

Study of the tumor tissue generates a wealth of information about that specific tumor, but it also identifies patterns and commonalities with other tumors. This allows scientists to determine sub-groups of a tumor that may be vulnerable to known treatments, or lead them to developing new ones.

THE CLINICAL TRIALS:

Using the information gleaned from the tissue samples, researchers can conduct clinical trials to test new drugs, new delivery systems, and other potential options for children diagnosed with a similar tumor.

THE GOAL:

After thorough testing in the lab and in clinical trials, effective new treatments emerge for pediatric brain tumors, creating hope for families.