Commonly, patients’ families feel helpless to combat DIPG/DMG. One way to help in this fight while navigating DIPG/DMG is to share blood, saliva, cerebral spinal fluid, cystic fluid, or tumor tissue samples for research.
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:
Children’s Brain Tumor Network (CBTN)
Count Me In
TGen DIPG Studies
Gift from a Child