About DIPG
Pediatrics Deadliest Brain Tumor
"A rare, fast-growing tumor that forms in cells called glial cells in a part of the brain stem called the pons. DIPGs tend to spread to nearby tissue and other parts of the brain stem, are hard to treat, and have a poor prognosis (outcome). They usually occur in children. Also called diffuse intrinsic pontine glioma."
- National Cancer Institute
Video Courtesy of UF Health
Statistics
300
Approximately 300 children in the United States are diagnosed with DIPG each year
9
The median survival for a child diagnosed with DIPG is 9 months
2%
The five-year survival rate for a child diagnosed with DIPG is 2 percent
Dana-Farber Cancer Institute. "Childhood Diffuse Pontine Glioma (DIPG)"
Jansen, Marc H., et al. "Survival prediction model of children with diffuse intrinsic pontine glioma based on clinical and radiological criteria." Neuro-oncology 17.1 (2015): 160-166.
The DIPG/DMG Resource Network. "DIPG Survival Rate and Prognosis"
Causes
"Researchers do not yet know what causes DIPG. Like most cancers, DIPG occurs when something goes wrong with the process of cell reproduction. However, unlike many other cancers, there is no evidence that indicates DIPG is caused by environmental factors (exposure to chemicals or radiation), or specific inherited genetic variations."
-The DIPG/DMG Resource Network
Symptoms
Most common symptoms of DIPG include:​
Problems with eye movement including double vision, drooping eyelids, and inability to completely close eyes
Facial weakness, drooping on one side of the face
Sudden appearance of hearing problems, including deafness.
Trouble chewing or swallowing, gagging while eating
Limb weakness, difficulty standing or walking, abnormal gaits, unbalanced limb movements
Headache
Nausea and vomiting from brain edema (swelling) or hydrocephalus.
​​
-Weill Cornell Brain and Spine Center
Treatment Options
Surgery is not currently considered an option in DIPG patients due to the its location in a critical area for many major life functions, the brain stem.
​
Chemotherapy is generally ineffective in combatting DIPG, although experimental chemotherapy drugs have been used in conjunction with radiation therapy.
​
Radiation therapy is the current standard of care for DIPG patients and is effective for lengthening the expected lifespan post diagnosis by a few months. However, it is not a cure.
​
-Weill Cornell Brain and Spine Center
​
Clinical trials offer patients and families potential treatment alternatives to the aforementioned options.
DIPG/DMG Collaborative
2023 Foundational Research Sponsor
The DIPG/DMG Collaborative is made up of over 25 foundations collaboratively funding millions of dollars in research.
​
The DIPG / DMG Symposium, which occurs every two years, is the culmination of not only the DIPG / DMG Collaborative’s funding cycle, but also features unique perspectives on research from experts around the globe.
With a goal of seeking the balance of research transparency, institutional collaboration, strategy and the elimination of duplication, the DIPG / DMG Collaborative funds both clinical and translational research worldwide.
