How to Help
Support DIPG/DMG Research
In addition to enrollment, consider supporting DIPG/DMG Research by donating to The Cure Starts Now.
Contact the DIPG/DMG Registry
Hours: Monday-Friday, 8:00 am – 5:30 pm EST
Email: [email protected]
DIPG and DMG are rare, and individual patients can have important differences in their genetics, tumor biology, response to treatment, and clinical course. Because of these differences, the registry will be most useful if it collects data and tumor samples from the largest and most diverse group of patients possible.
Please consider enrolling in the DIPG/DMG Registry. Patients and families who want to include their child’s information in the DIPG/DMG Registry should contact the DIPG/DMG Registry to request a copy of the DIPG/DMG Registry consent form which can authorize their child’s hospital to give information to the DIPG/DMG Registry.
Some DIPG/DMG 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.1,2
Through the DIPG/DMG Registry, families and patients have the option to donate their child’s brain and tumor to research through a limited autopsy. This tissue will be stored in the DIPG/DMG 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 DIPG/DMG Registry to discuss logistics of tumor donation.
1. 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
2. Broniscer A, Baker JN, Baker SJ, et al. Prospective collection of tissue samples at autopsy in children with diffuse intrinsic pontine glioma. Cancer. 2010;116(19):4632-4637.