NIH funding changes delay pediatric brain tumor trial, extending wait for DIPG patients

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NIH funding delays DIPG trial

Highlights

National Cancer Institute ended Pediatric Brain Tumor Consortium funding in August 2025, forcing a 13-month pause in new pediatric brain tumor trial enrollments.
Two clinical trials were shut down and four are being shifted to a broader network, delaying a key DIPG mRNA treatment study by at least a year.
Only about 4% of federal cancer research funds support childhood cancer, with even less for pediatric brain tumors, heightening dependence on philanthropy.

Trial delay tied to pediatric research network overhaul

As first reported by CNBC, the delay centers on changes to federal support for the Pediatric Brain Tumor Consortium, a network of hospitals and academic centers created by the National Cancer Institute to run trials for children with brain cancer.

According to Ira Dunkel, chair of the consortium, the National Cancer Institute notified the group in August 2025 that it could no longer reapply for funding. Dunkel said the only rationale he had seen at the time appeared in a post on NCI's website saying the decision followed an assessment of how to use clinical trial resources for maximum impact.

Eugene Hwang, a brain cancer expert at Children's National Hospital in Washington, D.C., said the consortium would have provided critical infrastructure for an mRNA treatment trial he is developing for DIPG. He said the funding disruption delays the study by at least a year, while Dunkel said two clinical trials were shut down and four others are being transferred to a larger network after a 13-month period in which no new patients could enroll.

Emily Hilliard, a spokeswoman for the Department of Health and Human Services, said the Trump administration remains committed to childhood cancer research and that NCI is moving trials to a broader hospital network because it believes that will speed development of new treatments. She said the decision is not a cost-cutting measure but reflects changes in the pediatric cancer trial landscape.

Limited funding raises stakes for children and families

DIPG affects about 300 U.S. children each year and remains one of the deadliest pediatric cancers, with a five-year survival rate of about 2%. Researchers and advocates say the disease is especially difficult to treat because tumors grow in the brainstem, cannot be surgically removed and are hard to reach with drugs that must cross the blood-brain barrier.

The loss of consortium funding hits a field that already receives a small share of federal cancer research support. The article says only about 4% of federal cancer research funds go to childhood cancer, with an even smaller portion directed to pediatric brain tumors, leaving many projects reliant on philanthropy and family-founded charities.

Hwang said he and collaborators, including University of Florida specialist Elias Sayour, are still trying to launch the mRNA trial through the Pediatric Neuro-Oncology Consortium and an NIH grant application. But for some patients, including John Paul Macri, the timeline no longer works; his cancer has spread to his spine, making him ineligible for clinical trials, and he is now in hospice care.

Our earlier article on the surge in biotech M&A explained how big drugmakers are buying smaller companies to shore up pipelines ahead of looming patent expiries. We noted that these deals are increasingly shaped by regulatory scrutiny, antitrust review, and intellectual-property disputes—factors that can slow or complicate the path from promising technologies, including mRNA platforms, to real-world development.

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