The DIPG/DMG National Tumor Board: The Power of Advocacy

Background Diffuse intrinsic pontine gliomas (DIPG) and diffuse midline gliomas (DMG) are fatal brain tumors and clinical trial enrollment remains a cornerstone of treatment; however, barriers to trial identification, access and enrollment persist. The DIPG/DMG National Brain Tumor Board (DMG NTB) was created based on family foundation advocacy to address these challenges by providing centralized, multidisciplinary guidance to improve access to expertise and facilitate clinical trial awareness and enrollment. Methods We conducted a retrospective descriptive analysis of cases presented to the DMG NTB between November 2022 and December 2024. Data were extracted from standardized intake forms, meeting records and chart reviews, including patient demographics, disease characteristics, molecular findings, referring institution type, trial recommendations, and radiologic evaluations. Geographic reach and provider participation were also analyzed. Results A total of 349 presentations representing 279 unique patients were reviewed. Referrals came from 93 institutions across 35 states, including 48% from treating physicians, 34% via self-referral, and 18% from My DIPG Navigator. The median age was 9 years (range: 1–52), and 83% of patients had undergone tumor biopsy, with molecular profiling available in 81% of those cases. The DMG NTB provided a median of six clinical trial options. Imaging review resulted in additional findings, recommendations, or both in over half of cases. Participation grew by 89.5% over the evaluated time period. Conclusions The DMG NTB has established a scalable, patient-centered system that enhances trial awareness, eligibility screening, care coordination, and multidisciplinary learning for patients with DIPG/DMG. This parent-driven initiative addresses longstanding gaps in access to expertise. Ongoing integration with research networks will be critical to maximizing its impact on outcomes for children and young adults.