Diffuse Intrinsic Pontine Glioma

They Will Not Be Forgotten

A child diagnosed today with DIPG faces the same prognosis as a child diagnosed 40 years ago. The lack of progress on DIPG is due to a lack of tumor tissue available for study and a lack of research funding.

To TGen, this is unacceptable.

An Act of Courage and Defiance

As with organ donation, advance planning can eliminate logistical concerns and soften the emotional impact of this decision. Other families of DIPG patients have bravely planned ahead to donate their child’s tumor tissue upon their passing. From this gift, our scientists can conduct genetic analyses to increase understanding of DIPG. We may also be able to perpetuate cell lines to test promising, new therapies.

Your child’s legacy will help future DIPG patients. They will not be forgotten.

Questions About Tissue Donation

Families who have walked this path have had questions about the tissue donation process ahead of time. We have gathered answers to help your decision.

The collected tissue is used for two main purposes. First, deep genomic analysis (DNA and RNA) of the patient’s tumor compared against their normal tissue will be performed. This aids the growing characterization of DIPG. As additional cases are studied, a better understanding of molecular subtypes of the disease emerge, and this informs strategies for tailoring treatment to best match interventions with an individual patient’s disease.  Secondly, tumor cell lines will be developed. These serve as patient-derived models of DIPG which allow testing of new drugs, drug combinations, and the opportunity to link genetic events with optimal anticancer care.

Donated tissue will be shipped directly to TGen. We will coordinate with the hospital to prepare for tissue collection and shipment to allay concerns for your family.

It is extremely important that these samples be collected as soon as possible, ideally within three hours. Planning in advance for tissue donation can ensure that the proper preparations are in place for successful collection. TGen will work to ensure that this process puts as little burden on you and your family as possible.

Advance planning for tissue donation ensures that all contingencies will be accommodated so that the wishes of the family are honored. We will work with the hospital, hospice, or funeral home personnel to ensure that timely, respectful, and best-practices are utilized for the tissue donation.

No; tissue donation does not impede the family’s plans for memorial or funeral services. Many lives are touched by donated tissues, so the practices are well-developed, and fit seamlessly within the routine events at this time of family grieving.

TGen will cover all shipping and handling costs of your loved one’s tissue donation. Participating in this study will not include any additional costs for you.

Generous donors support the ongoing work to Move the Needle against DIPG. In many instances, the availability of tumor tissue specimens establishes unique opportunities for peer-reviewed grant awards that also support the research.

Circumstances permitting, we may be able to return this information to the families.

Yes. TGen is compliant with all regulations regarding protecting patient (and family) privacy, including the secure housing of medical information (including genetic information). All results are de-identified from patient or family information. Once data on DIPG or results from drug testing of patient-derived models of DIPG are produced and analyzed, we may publish and share these de-identified results.

If you have additional questions, or would like more information, please contact our Clinical Research Coordinator at 602-343-8653 or [email protected].