About tissue donation
The ChadTough Defeat DIPG Foundation encourages tumor tissue donation by families, which is an essential component to furthering research into DIPG. If you are a family that wants to learn more about tissue donation options during and/or after treatment, there are resources available to help you through this process. There is no cost to you or your family to donate tumor tissue. As difficult as it may be to consider tissue donation during your child’s illness, it could be one of the greatest gifts you and your child can provide to make an impact on DIPG research. Families often draw comfort from the knowledge that their child has been able to make such an important contribution towards progress for DIPG.
Medical researchers gain valuable knowledge about the biology of DIPG tumors through collection of specimens during treatment (which can be drawn from samples that are already collected during the course of treatment for medical reasons), as well as through donations after a child has succumbed to his or her tumor. We know that DIPG tumors are biologically distinct from adult brain tumors or even other pediatric brain tumors; it is imperative that we gain an additional understanding of the particular characteristics of DIPG. By looking at tumor cell DNA, RNA, and proteins, we can better understand how these tumors form and grow, and learn more about the behavior and makeup of the tumor. This information can help doctors improve diagnoses and develop targeted treatments.
Historically, tumor tissue has been scarce because it was unusual to biopsy DIPG tumors and because arrangements for autopsy tissue donation were not often discussed or arranged. More recently, this trend has changed, and many families who are eager to Defeat DIPG have actively worked with their doctors to arrange for tissue donation that may provide the key to finding a cure for this disease. For other pediatric brain tumors, rapid discoveries have resulted from collaborative efforts to share data and tumor specimens. While there has been an increase in DIPG tumor tissue donations, there is still a serious need for more samples to facilitate further research developments for DIPG.
Donations during treatment?
During your child’s treatment, there may be medical reasons why your treatment team will collect tissue, blood, urine, or cerebral spinal fluid from your child. Without subjecting your child to any additional tests than those which would already be conducted during the normal course of treatment, you can provide permission for a portion of what is collected to be preserved for medical research. There is no cost, no extra procedures for your child, and it could provide important information for DIPG research.
While previously it was unusual for a child to obtain a biopsy when an MRI indicated a DIPG diagnosis, it is becoming more common for children to obtain biopsies to gain additional information about their particular tumor. As molecularly targeted therapies are developed for DIPG, biopsy may have an increased role in guiding treatment strategy and decision-making. The tissue obtained from these biopsies can have invaluable information for researchers, and it can even be used in combination with tumor tissue obtained postmortem to allow for an understanding of how a specific child’s tumor developed over time, and how it responded to treatment. Families should discuss donation options if it is determined that their child will obtain a biopsy during the course of treatment.
If you are a family of a child with DIPG and you would like to consider tumor tissue donation in the event your child succumbs to his or her tumor, arrangements can be made in advance to ensure that such a donation can be made. Speaking with your oncologist, nurse, or social worker in advance can ensure there is adequate time to make arrangements and that you have a plan in place that will help the process to go smoothly after your child’s passing. Researchers generally prefer to obtain tissue as soon as possible after your child passes away, but your family’s needs will come first. Tissue donation can be accomplished whether your child dies at home or at a hospital.
Where to donate?
There are a number of hospitals that accept DIPG tissue donations and have current research studies focused on DIPG. The following resources are available for families who would like to consider tissue donation. While this can be a very emotionally difficult option to explore, we encourage families who would like to learn more to get information as early as they are comfortable. Families who want to give consent can make arrangements prior to a child’s passing to increase the likelihood of a successful donation. This can especially be true depending on where you are located in the country.
We recommend the following resources that can guide you through the steps for tumor donation:
GIFT FROM A CHILD
Gift from a Child is a national initiative supported by families who have lost children to brain cancer, private foundations, researchers, and medical professionals. Gift from a Child provides free guidance through Tissue Navigators who are trained to guide your family through the donation process. The Tissue Navigators 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. Tissue Navigators work across institutions and will assist families who would like to choose where the tissue will be donated. It is usually possible to send tissue to more than one researcher.
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 data widely across the research community. The program currently partners with five Centers of Excellence that are affiliated with the Children’s Brain Tumor Network. 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.
Learn more at https://giftfromachild.org or call 844-456-GIFT.
Tissue donation is also possible through Michigan Medicine’s Brain Tumor Program. For information about donations, please click here. You can also reach out to Dr. Carl Koschmann ([email protected]) or Kait Verbal ([email protected]).
Research is the key
In many respects, DIPG and other forms of pediatric brain cancer are still a mystery. Your donations fund important research to help discover this disease’s weaknesses.
One person can make a difference
Discover what you can do beyond your generous donation to help us build awareness and spread the word about pediatric brain cancer, especially DIPG.