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 decisionmaking.  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.