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A Protocol for Rapid Post-mortem Cell Culture of Diffuse Intrinsic Pontine Glioma (DIPG)
Published on: March 7, 2017
The DIPG/DMG National Tumor Board: The power of advocacy
Rebecca Ronsley1, Greta Peng1, Eileen Gutierrez1
1Ben Towne Center for Childhood Cancer and Blood Disorders Research, Seattle Children's Research Institute, Seattle, WA, United States (R.R., N.A.V.); Department of Pediatrics, Seattle Children's Hospital, University of Washington, Seattle, WA, United States (R.R., N.A.V.); Seattle Children's Therapeutics, Seattle, WA, United States (R.R., N.A.V.); Departments of Pediatrics and Neurology, University of California, San Francisco, San Francisco, CA, United States (G.P., E.G., S.M.W., M.J.B., S.M.); Texas Children's Hospital, Cancer and Hematology Center, Baylor College of Medicine, Houston, TX, United States (P.B., J.M.); Children's Healthcare of Atlanta and the Aflac Cancer Center, Emory University School of Medicine, Atlanta, GA, United States (J.F.); Children's Hospital Colorado, Morgan Adams Foundation Pediatric Brain Tumor Research Program, University of Colorado School of Medicine, Aurora, CO, United States (A.L.G.); Center for Cancer and Blood Disorders and The Brain Tumor Institute, Children's National Hospital, Wasthington, DC, United States (L.B.K.); Department of Pediatrics, University of Michigan Medical School, Ann Arbor, MI, United States (C.K.); Department of Neurology and Neurological Sciences, Stanford University, Stanford, CA, United States (M.M.); Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, IL, United States (A.S.P.-F.); Centre for Molecular Medicine Norway (NCMM), University of Oslo and Oslo University Hospital, Oslo, Norway (S.M.W.); Swiss Institute for Experimental Cancer Research, School of Life Sciences, École Polytechnique Fédérale de Lausanne (EPFL), Lausanne, Switzerland (S.M.W.); Radiation Oncology, Frailin Biomedical Research Institute, Virginia Tech, Blacksburg, VA, United States (C.-C.F.W.); Department of Radiation Oncology, Children's National Hospital Brain Tumor Institute, Washington, DC, United States (C.-C.F.W.); Radiation Oncology, Inova Schar Cancer Institute, Fairfax, VA, United States (C.-C.F.W.); Children's Hospital of Colorado, Department of Radiology, University of Colorado School of Medicine, Aurora, CO, United States (D.M.); Department of Pediatrics, UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco, CA, United States (S.M.).
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.
Insights
The Diffuse Intrinsic Pontine Glioma/Diffuse Midline Glioma National Brain Tumor Board (DIPG/DMG NTB) improves access to clinical trials for rare brain tumors. This initiative centralizes guidance, enhancing trial awareness and enrollment for pediatric patients.
Area of Science:
- Pediatric Neuro-oncology
- Brain Tumor Research
- Clinical Trial Navigation
Background:
- Diffuse intrinsic pontine gliomas (DIPG) and diffuse midline gliomas (DMG) are aggressive pediatric brain tumors with limited treatment options.
- Barriers to clinical trial identification, access, and enrollment persist for patients with DIPG/DMG.
- The DIPG/DMG National Brain Tumor Board (DMG NTB) was established to centralize multidisciplinary guidance and improve access to expertise and clinical trials.
Purpose of the Study:
- To evaluate the structure, reach, and impact of the DMG NTB in facilitating clinical trial access for patients with DIPG/DMG.
- To analyze the characteristics of patients referred to the DMG NTB and the types of guidance provided.
- To assess the growth and potential of the DMG NTB as a patient-centered resource.
Main Methods:
- Retrospective descriptive analysis of cases presented to the DMG NTB from November 2022 to December 2024.
- Data extraction from intake forms, meeting records, and chart reviews, including demographics, disease characteristics, molecular findings, and trial recommendations.
- Analysis of geographic reach, provider participation, and growth in patient referrals.
Main Results:
- 349 presentations from 279 unique patients were reviewed, with referrals from 93 institutions across 35 states.
- The median patient age was 9 years, with 83% having undergone tumor biopsy and 81% with molecular profiling.
- The DMG NTB provided a median of six clinical trial options per patient, and participation grew by 89.5% over the study period.
Conclusions:
- The DMG NTB provides a scalable, patient-centered system that enhances clinical trial awareness, eligibility screening, and care coordination for DIPG/DMG patients.
- This parent-driven initiative effectively addresses gaps in accessing specialized expertise for rare pediatric brain tumors.
- Continued integration with research networks is crucial for maximizing the DMG NTB's impact on patient outcomes.
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