A NATIONAL brain cancer board is helping families and doctors find clinical trials for children and young adults. Finding the right trial for a child with diffused intrinsic pontine gliomas and diffuse midline gliomas (DIPG/DMG) is hard, especially outside a major academic center. In its first two years, the DIPG/DMG National Brain Tumor Board reviewed 279 patients from 93 institutions across 35 states and gave each treating team a clear list of options to discuss with families.
Parent advocacy groups pushed for the tumor board, which was founded through a collaboration between those groups and pediatric neuro-oncology leaders. The virtual forum meets twice a month and brings together experts in neuro-oncology, radiation oncology, neuroradiology, neurosurgery, neuropathology, and genomics. Within five business days, the treating team receives a report with the clinical history, restaged imaging, molecular results, and trial options with contact details. Sequencing is offered at no charge when a tumor has not been profiled.
Between November 2022 and December 2024, the board logged 349 presentations. Treating physicians made 48% of referrals, families 34%, and a patient navigator program 18%. Median age was 9 years (range 1 to 52), 64% had newly diagnosed disease, and 62% of tumors were pontine. Among patients who had a biopsy, 81.0% had molecular profiling available at discussion.
Reports listed a median of six trials, with a median of four for which the patient appeared potentially eligible. The board did not favor one trial over another, instead providing details to support shared decision making. About 13.7% of patients were judged ineligible for trials because of functional status, and the board backed supportive or palliative care for them. Imaging review added findings, recommendations, or both in over half of cases, most often advising a complete neuro-axis MRI or additional brain sequences. The board agreed with the diagnosis in 97% of cases.
The analysis was retrospective, so it cannot show survival, quality of life, or actual trial enrollment. The process was not a formal second opinion, the board did not oversee whether recommendations were followed, and it lacks dedicated adult neuro-oncology representation. Still, cases discussed rose 175% and attendance grew 89.5%, which suggests steady demand. Investigators plan registry integration and prospective tracking of how the DIPG/DMG National Tumor Board shapes treatment decisions and equity of access.
Reference
Ronsley R et al. The DIPG/DMG National Tumor Board: The Power of Advocacy. Neurooncol Pediatr. 2025;1(2):wuaf009.
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