DIFFUSE INTRINSIC PONTINE GLIOMA (DIPG)

Tissue Donation for DIPG Research: An Act of Courage and Defiance

DIPG tumor tissue is a gift from your family to our TGen family to give hope and answers to future families facing this diagnosis.  With this gift, our scientists can conduct multiple studies to increase understanding of DIPG. Advanced planning can decrease the logistical concerns and soften the emotional impact of this incredibly difficult decision.

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

Frequently Asked Questions (FAQs)

 What is the purpose of this tissue donation?

Deep genomic analysis of the patient’s tumor compared against their normal tissue will be performed. As additional cases are studied, a better understanding of the molecular subtypes of DIPG will emerge and inform strategies for tailoring treatment to best match interventions with an individual patient’s disease. Additionally, 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. 

How is the tissue donation coordinated?

TGen will coordinate the logistics for tissue collection and shipment to alleviate concerns for your family. Advanced planning for tissue donation ensures that all contingencies will be accommodated and 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. 

How soon must the donation process be completed after my child passes?

 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. 

Does tissue donation slow down the memorial or funeral service?        

Tissue donation does not typically impede the family’s plans for memorial or funeral services. TGen will work to coordinate the tissue donation so that it fits within the routine events during this time of family grieving. 

How are the expenses of the research covered?

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. 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. 

Will I be able to find out the results from any research on the tissue?

Circumstances permitting, we may be able to return research results to families of participants. 

How do I enroll?

Please visit www.tgen.org/dipg  and click “To View the Tissue Donation Study Release Form and Enroll.”  If you choose to enroll after viewing the release form, you can do so using the DocuSign links on the page.  You will then be contacted by the Clinical Research Coordinator.

For more information, please contact the Clinical Research Coordinator at [email protected] or 1.602.343.8653

Click to open this FAQ as PDF

You are being asked to read this information sheet because you have been diagnosed, or have a child or loved one who was diagnosed, with a cancer, such as Diffuse Intrinsic Pontine Glioma (DIPG). We are requesting permission to collect and perform experimental sequencing on you/your child or loved one’s tumor tissue or other samples. Sequencing may tell researchers how genes influenced the cancer and may contribute to understanding the genetic makeup of cancers like DIPG. We will also collect medical and demographic information about you/your loved one. Please note that while our team will handle the necessary steps to set up the tissue donation at the appropriate time, we will need several days of advanced planning to ensure preparation of the collection. 

The samples will be stored at TGen indefinitely.  The researchers may later decide that they want to perform additional tests on these samples.  Future research on the samples may be performed by TGen or by researchers outside of TGen. It is possible that you or your family will not be notified of future research.  The researchers may decide to share de-identified data gathered from the samples to help further research. One way that we do this is by putting information into scientific databases, where it is stored along with information from other studies. Researchers can then request to study the combined information to learn even more about cancer and diseases. Different databases may have different ways of reviewing such requests. Researchers with approval may be able to see and use your/your loved one’s de-identified information, along with information from many other people.

 There is a slight risk of a loss of privacy and confidentiality associated with genomic research. We will take many precautions to protect your family’s privacy. All samples and data will be coded with a unique study ID number. Personally identifying information (such as name) will be stored separately in a secure location with limited study personnel access. 

There will be no cost to donate the sample(s) and you and your family will not be paid for donating the sample(s). There is no direct benefit if you agree to participate. Your alternative is to not participate.  However, families in the future may benefit from the information obtained from this research. 

For questions, concerns, or complaints about the study, or about a research-related problem, please contact the study coordinator at 602-343-8653. This research is being overseen by an Institutional Review Board (IRB). An IRB is a group of people who perform independent review of research studies. You may talk to them at (800) 562-4789, [email protected] if you have questions about research subjects’ rights, concerns, or complaints that are not being answered by the research team. 

The study staff may share the records generated from this research with the sponsor, regulatory agencies such as the US Food and Drug Administration, Health and Human Services, and the IRB. This information is shared so the research can be conducted and properly monitored. The people receiving this information may not be required to protect it and your/your child’s information may be re-disclosed without your permission. If you do not provide permission to use your/your child’s information, they cannot be in the study.

 Your decision to participate or include your child / loved one in this study is voluntary.  You will not be penalized or lose benefits if you decide not to participate or if you decide to stop participating.  If you decide you would like us to stop doing research on the sample, please contact a study coordinator at 602-343-8653.

(Note, clicking on the buttons above will take you to the Docusign website where you must authenticate the signature process).