DIPG Survival Rate and Prognosis

While research over the last ten years has helped improve treatment for DIPG patients, and somewhat increased life expectancy, the prognosis is still not good–with the median survival range being from 8-11 months1.

Still, contrary to popular belief, it has been changed by recent advances in research and in diagnosis. In particular the DIPG/DMG Registry and the SIOPe European DIPG Registry has helped to lead this effort, bringing both a communication conduit to treating institutions and advancing the expertise of doctors in earlier diagnoses.

Statistics overall with DIPG have also evolved, culminating in the release of updated data from the International DIPG Registry in 2018, identifying changes from previously assumed statistics, including:

  • 2-year survival is approximately 10%2
  • 5-year survival is approximately 2%2 (up from 1% previously reported)

See the Latest DIPG Statistics

There are several known long term survivors though there is no commonality to those cases. However, research has shown some factors and/or trends that appear to indicate patients surviving longer than 2 years. These include2:

  • The patient being younger than 3 or older than 10 years of age
  • Having fewer symptoms at diagnosis
  • Having smaller tumors on MRI at diagnosis, with less evidence of extension beyond the pons
  • Having an HIST1H3B mutation

Additional understanding of DIPG and DMGs have also led to the customization of drug therapies that may better manage those tumors that possess the histone mutations.  Further advances in diagnoses, supported by increased use of biopsies when abnormalities are detected by MRI also can allow improved understanding and treatment of DIPG and DMG.

Through the work of the DIPG Registries, initial diagnoses have also improved.  Whereas previous identification of DIPG and DMG relied heavily on the relative nature of an MRI reading and the radiologist familiarity with these rare diseases, through the free second-opinion conduit of the International Registry, misdiagnoses are down.  As much as 10% of misdiagnosed DIPG and DMGs are actively prevented with uniform reading of MRIs, leading to improved treatment and prognosis. 

Overall, there is still much work to do, but by just understanding DIPG and DMG better, we are already leading to better outcomes.

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