What question did this study set out to answer?

To review the resource implementation and utilization of the National Brain Tumor Board for DIPG and DMG cases.

March 14, 2026Neuro-Oncology Pediatrics0 citationsOpen Access

DMG-65. The Diffuse Intrinsic Glioma (DIPG) and Diffuse Midline Glioma (DMG) National Brain Tumor Board: Review of Resource Implementation and Utilization

GPGreta Solinap PengUniversity of California, San Francisco RRRebecca RonsleySeattle Children's Hospital EGEileen Jeffrey GutiérrezUniversity of California, San Francisco

Key Points

To review the resource implementation and utilization of the National Brain Tumor Board for DIPG and DMG cases.
Review of 200 cases discussed at the NBTB from January 2023 to May 2024.
Analysis of patient characteristics, tumor features, and recommendations for therapeutic options.
Biopsy and molecular profiling data collected for each case.
78% of patients underwent biopsy, with 55% receiving complete molecular profiling.
Somatic driver alterations were identified in key genes such as TP53 and ACVR1.
A total of 76 tumor-directed agents were recommended based on the NBTB discussions.

Abstract

Abstract The diffuse intrinsic pontine glioma (DIPG)/diffuse midline glioma (DMG) National Brain Tumor Board (NBTB) is a virtual, twice monthly national resource that offers clinicians evidence-based recommendations on therapeutic options and potential clinical trials for patients with DIPG or DMG in the United States. Cases presented at the NBTB were reviewed including patient characteristics, tumor features, and TB recommendations. 200 cases were reviewed from January 2023 to May 2024. There were an average of six cases (range 1-12) presented per tumor board, including 75 institutions and 33 states. Most patients were children ages 1 to 14 years (73%), 21% of patients were adolescents and young adults ages 15 to 39 years, and 6% of patients were adults. Fifty-four percent (n = 108) of patients identified as non-Hispanic while 49% of patients identified as White, and 92% identified English as the preferred language. Cases included DIPG (n = 113), thalamic DMG (n = 45), spinal DMG (n = 15) and other DMG (n = 27). Biopsy was done in 156/200 (78%) patients and 110 (55%) tumors had complete molecular profiling. Somatic driver alterations were reported in H3F3A (p.K28M) (88%, n = 97), TP53 (54%, n = 59), ATRX (20%, n = 22), PIK3CA (14%, n = 15), PPM1D (13%, n = 14), NF1 (9.1%, n = 10), PDGFRA (7.2%, n = 8), ACVR1 (6.4%, n = 7), and EGFR (5.5%, n = 6). Most patients were presented either prior to progression (51%, n = 102) or at the time of progression/recurrence (33%, n = 66). Seventy-six tumor-directed agents were included in the final recommendations. Patients were potentially eligible for a median of four (range 0-11) trials with a median of six (range 0-13) trials discussed per patient. The NBTB serves as a critical national resource, delivering evidence-based, patient-centered recommendations. This analysis highlights the wide range of provider institutions and tumor profiles utilizing the NBTB for discussion of therapy options and clinical trials. Future work will focus on expanding the reach and accessibility of the NBTB to promote equitable access and ensure its benefit across diverse patient populations.

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