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Aug 21, 2025, 19:28

Parvati Tiwari: Advocates Express Alarm Over NCI’s Decision to End PBTC Funding for Pediatric Brain Tumor Trials

Parvati Tiwari, CMO at SURYA, shared on LinkedIn:

“As a bereaved mother and patient family advocate for the Pediatric Brain Tumor Consortium (PBTC), I am alarmed and heartbroken by the NCI’s decision not to issue a new RFA for PBTC funding. When NCI support ends in March 2026, so too will a critical lifeline for children diagnosed with brain tumors across the U.S.

Formed by the NCI in 1999, the PBTC has been a cornerstone of early-phase clinical research in pediatric brain tumors, giving families access to innovative, life-extending trials, often the only options when standard treatments fail. Its loss would not only close the door on urgently needed trials but also dismantle a vital bridge between researchers and clinicians. The PBTC has long been a catalyst for the rapid translation of scientific discovery into treatment.

For families like mine, the PBTC has represented hope. To see that hope taken away, at a time when brain tumors remain the leading cause of cancer-related death in children, feels like a devastating step backward. Families already navigating the unimaginable will now be left with fewer options, fewer trials, and fewer chances for better outcomes.

The closure of PBTC is not just an administrative decision. Without it, progress stalls and children pay the price. I urge policymakers to recognize what’s at stake here.”

Daniel Morgenstern, Associate Professor at University of Toronto, shared Parvati Tiwari’s post on LinkedIn:

“Very unfortunate news. In theory some of these studies will be wrapped into PEP-CTN but I can’t but imagine that overall it will reduce the number of trials being done and slow progress towards new treatment options. Particularly unfortunate for patients in Canada who may now completely lose access despite The Hospital for Sick Children and Ste Justine in Montreal only recently having joined PBTC.”

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