Some DIPG researchers have advocated that patients and families be approached more regularly to consider postmortem brain or tumor donation. One recent institutional series demonstrated that approximately half of those approached for autopsy, agreed to the autopsy and tissue donation; no families reported additional distress from the autopsy; and families generally reported deriving comfort from the hope that donated tissue could contribute to research. The study also demonstrated that tissue adequate for analysis was obtained as long as 48 hours after death.
Through the DIPG Registry families and patients have the option to donate their child’s brain and tumor to research through a limited autopsy. This tissue will stored in the DIPG Registry tissue repository for future studies and in some cases fresh tissue will be sent for model development. The decision to donate may occur at any time during the clinical course. Please contact the International DIPG Registry office to discuss logistics of tumor donation at 1-877-349-8074 or firstname.lastname@example.org.
- Angelini, P., et al., Post mortem examinations in diffuse intrinsic pontine glioma: Challenges and chances. Journal of neuro-oncology, 2011. 101(1): p. 75-81