Brain tumors are now the most common cancer and cause of cancer-related death in children less than 15 years of age. They are the most common solid tumor in children – accounting for approximately 25% of all childhood cancers. Diffuse intrinsic pontine gliomas (DIPG) are the most common brainstem tumors in children, representing approximately 75-80% of all pediatric brainstem tumors.
Thanks to patient information being collected by the DIPG Registry, we are now better able to view and chart patient attributes to look for correlative data. This data is already being used to influence new research.
- Approximately 150-300 patients are diagnosed with DIPG in the USA per year.
- The median age of patients with DIPG is approximately 6-7 years old.
- The male/female ratio of DIPG patients is 1:1.
- Median overall survival for DIPG patients is < 1 year – ranging from 8-11 months.
- 2-year survival is approximately 10%.
- 5-year survival is approximately 2%
A Word on Clustering
DIPG Clustering is often cited in many locations around the world. More often than not, this appearance of clustering can be attributed to the institutions that diagnose DIPG and those that actively report it to the largest DIPG database in the world, the International DIPG Registry. Still, it is possible that environmental conditions can create clustering phenomena; however, the only way to properly identify this will be through the DIPG Registry.
Currently there are 110 sites (both active and in process) from 15 countries* participating in the International DIPG Registry. As it does not capture data from all patients diagnosed with DIPG across the world, the Registry cannot accurately address the issue of the possible existence of geographic clusters. The DIPG Registry is working hard to include as many sites as possible with the hope to answer this question in the following years.