Diffuse Intrinsic Pontine Glioma (DIPG)
The Condition
A rare and aggressive brain tumor with only 200–300 cases a year in US children that’s hard to access for biopsy or drug delivery due to its location. These tumors develop in the brain’s pons, which is the area that sends messages to the spinal cord and body, controlling important functions like heartbeat, breathing, sleeping, balance and bladder control. As they grow, they put pressure on the brain and impact nerve function.
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The Treatment
Complete removal by surgery is unsafe because of the possibility of damaging health and important brain cells. The most common treatment is a combination of steroids and radiation therapy. Chemotherapy hasn’t proven to be successful on its own, however it’s being used in clinical trials with radiation and other therapies. (Talk with your child’s doctor about whether any open clinical trials may be a good fit.)
The Nationwide Children’s Difference
Maryam Fouladi, MD, co-executive director of the Pediatric Neuro-Oncology Program at Nationwide Children’s, founded the CONNECT Consortium in 2012 to build a network of patients and clinician focused on DIPG. Additionally, the International Collaborative of Pediatric Cancer Research and Clinical Care Centers exists to help children with high-risk brain tumors such as DIPG and other high-grade gliomas and is now based out of Nationwide Children’s.
The Ongoing Research
As a national leader in oncology research and clinical trials, there are many ongoing studies to understand why these tumors develop and how to appropriately target them. We are members of all major pediatric brain tumor clinical trial consortia including Pediatric Brain Tumor Consortium (PBTC), Collaborative Network of Neuro-Oncology Clinical Trials (CONNECT), Pacific Neuro-Oncology Consortium (PNOC), and the Children’s Oncology Group (COG). Currently, we have many open clinical trials testing new drugs in tumors, including DIPG tumors.