The Research Project

Open DIPG (Diffuse Intrinsic Pontine Glioma) Research Project

This research project is all about collaboration, and is the first of its kind in many ways. “Open DIPG (diffuse intrinsic pontine glioma)” is the first translational, multi-institutional study that will address an unmet need for treating pediatric Central Nervous System (CNS) tumors.

  The overall objective is to utilize the strength of the many institutions involved in the two consortia involved, the Pacific Pediatric Neuro-Oncology Consortium (PNOC) and the Children’s Brain Tumor Tissue Consortium (CBTTC) to accelerate discovery, innovation, and effective treatment of the most challenging childhood cancers using a multi-pronged approach. This is the largest research project ever done on this type of tumor, DIPG and will serve as a model for research on all pediatric cancers and beyond in the future.


The DIPG trial is the first in the United States to test the use of next-generation sequencing to inform an individualized treatment plan in children and young adults with newly diagnosed DIPG. Children with diffuse intrinsic pontine glioma (DIPG) and/or high grade gliomas (HGGs) continue to have a dismal prognosis with a median survival time of 9 months. Very little progress has been made over the last four decades of clinical trials, and almost all affected children die from the disease. Because of the perceived risk of biopsy of these tumors, treatment has historically been guided by imaging-only determinations. In recent years, with improved procedures for biopsy and genetic sequencing, the ability to obtain tumor specimens and sequence them allows new understanding of the molecular changes driving tumor growth. This creates the opportunity to define precision medicine approaches for these tumors so the patient receives only the treatment needed to treat their specific tumor type. This project is innovative in many ways but especially when using patient-derived preclinical models to assist in choosing between one of four available Federal Drug Administration (FDA) approved treatment options for that patient.

To fully empower the discovery and therapeutic landscape for DIPGs/HGGs, collaborative networks of researchers and clinicians are required to represent the diverse set of expertise and approaches needed for meaningful and rapid progress. Supporting such collaborative teams across institutions requires a differential funding model than traditional National Institute of Health (NIH)-funded studies that only foundation-based approaches are likely able to support.

Foundations like ours are bridging the gap left by the NIH’s minuscule 4% of their annual research budget that is allotted to all pediatric cancer research.


Together we are funding these important research efforts that our children so desperately need to give them a fighting chance.