Sharing data is a highly personal decision to be made by your family if you choose to consider it.
Without a significant amount of data from DIPG/DMG tumors, scientists cannot fully understand how the tumors behave, how to prevent them from forming, and how to treat them while minimizing side effects. If you choose to share patient information or biospecimen samples, they are treated as precious resources. Everyone who processes or interacts with the samples handles them with the highest level of respect and care.
Below are some of the most common organizations that DIPG/DMG families consider for data sharing:
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Children’s Brain Tumor Network (CBTN)
Children’s Brain Tumor Network drives innovative discoveries, pioneers new treatments and accelerates open science to improve the health of every child and young adult diagnosed with a brain tumor. The database matches the blood, central spinal fluid, and tissue samples with the patient’s longitudinal clinical data, genomic data, imaging, and histology data for use by researchers around the globe. By standardizing the process and storing the samples with the utmost care, CBTN is well-positioned to provide data quickly for effective scientific breakthroughs. If you are interested in contributing to research in this manner, speak with your physician and ask about your ability to consent to share your data with CBTN.
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Count Me In is committed to making every patient’s experience count in order to more deeply understand cancer. Patients help shape and drive research by contributing information about their cancer and experience through surveys and by directly sharing and providing access to medical records and biological samples for study and analysis. From patient contributions, the Count Me In team analyzes and shares de-identified data freely to enable new discoveries across cancer. Data generated by Count Me In is shared regularly via scientific platforms so that it can be accessible for researchers everywhere to make impactful discoveries.
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Translational Genomics Research Institute (TGen), an affiliate of City of Hope, is a nonprofit medical research institute dedicated to conducting groundbreaking research with life-changing results. TGen’s approach is focused on conducting genomic profiling of tumors and the development of biomarkers from patients’ blood, cerebral spinal fluid, and tissue specimens. These specimens will be used to grow DIPG cell lines to test new and promising therapies.
Currently, a patient may voluntarily enroll in TGen’s study to collect data from the patient’s blood and/or cerebral spinal fluid samples when taken routinely during regular ongoing treatment of the patient. TGen provides a package to the patient family to take to lab draws and return to TGen thereafter. You can participate in TGen’s study while enrolled in any other clinical trials.
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It is very difficult to face the death of a child from DIPG/DMG. When a child’s life ends too soon, donating tissue is a way for the child and family to take a final stand against cancer. Choosing to donate your child’s tumor or brain tissue may be instrumental in helping end childhood brain cancer. If you choose to donate brain tissue, it is important to express your wishes to your physician in advance along with a team member from Gift from a Child. Gift from a Child strives to increase awareness and compassionately helps families arrange for a seamless donation process. This tumor or brain donation will be given to research centers focusing on DIPG/DMG to help find a cure.
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