When a family first hears that their child has a brain tumor, their whole world is changed. Fast, complex decisions must be made while they are still shocked by an unimaginable diagnosis.
“Unfortunately for a lot of pediatric brain tumor diagnoses, there is no standard of care,” says Dr. Sabine Mueller from University of California San Francisco, where she leads the Pacific Pediatric Neuro-Oncology Consortium. PNOC, however, wants to change that. “We want to have a treatment available for every child, but without the development of clinical trials a lot of patients really don’t have access to any potential therapies,” Mueller continues. “Knowing that the disease has a grave outcome, it is so important for families that they at least are given an opportunity. Clinical trials investigate promising new treatment strategies, and we all hope that our clinical trials lead to better outcomes, which we have been able to show in some of the trials we have completed.”
Since PNOC was founded in 2012, its innovation has rapidly changed the landscape of pediatric brain cancer research and clinical trials. In less than 10 years PNOC has grown from eight institutions along the Pacific Coast into an international consortium with study sites across the U.S., Europe, Asia and Australia.
“What really sets PNOC apart is our drive to share any data we can, in real time, with the research community without compromising any clinical trial outcome,” says Mueller, “because our patients don’t have time, and being able to get information out to the community so that they can use it to help us solve a problem is very important.”
PNOC now has over 500 patients enrolled in their clinical trials, with 25 trials open. The open trials represent the tip of the iceberg, as teams of researchers work together across time zones and borders to translate the latest findings in brain tumor biology into better treatments for the many deadly pediatric tumor types. But research and clinical trials require vast sums of money. Pediatric brain cancer is the leading cause of cancer-related death for children, yet a disproportionately low amount of federal research funding goes to pediatric brain cancer.
A lack of funding is one of the key issues PNOC faces. “We can see what we can achieve if a lot of resources are put towards one cause; we saw it just with our recent example with COVID,” says Mueller. “But we don’t have that kind of support in pediatric neuro-oncology, it’s very underfunded and relies almost solely on philanthropy.”
PNOC has partnered with Marin residents Bruce and Allyn Campbell, who established PNOC Foundation after their son’s diagnosis, in an effort to urgently raise funds to support PNOC’s work. Visit the PNOC Foundation website to learn more about how you, too, can help support this time-sensitive work today.
