The DIPG Registry continues to expand to international sites, with currently over 600 research participants enrolled. Funding has been approved through 2018, which will allow long-term collaborative research projects on all aspects of DIPG.

Most recently, the DIPG Registry team attended the 17th Annual International Symposium on Pediatric Neuro-Oncology (ISPNO) in Liverpool, United Kingdom. Dr. Lindsey Hoffman presented initial results of the, “Characteristics of Long-term Survivors Project,” to the entire conference delegation.   Two posters were also presented, with the poster entitled “External validation of survival prediction model for Diffuse Intrinsic Pontine Glioma”  awarded as a finalist for best poster.

ISPNO oral presentation by Dr. Hoffman


International DIPG Registry and SIOPE Registry staff with their joint ISPNO poster. Pictured left to right: Brooklyn Chaney, Sophie Veldhuijzen van Zanten, Josh Baugh.

The DIPG Registry has approved via the Scientific Advisory Committee these projects:

  • Study 1: Clinical, radiological, and histo-genetic characteristics of long-term survivors of diffuse intrinsic pontine glioma: a collaborative report from the International and SIOP-E DIPG Registries (Oral presentation ISPNO, 2016)
  • Study 2: DIPG: Contemporary Survival Endpoints (Cooney, Monje, Warren: Poster presentation, ISPNO, 2016)
  • Study 3: Establishment of In Vitro and In Vivo Models (Li, Monje)
  • Study 4: External validation of the Survival Prediction Model for Diffuse intrinsic pontine glioma.  (Poster  presentation: ISPNO)
  • Study 5: Comprehensive Molecular-Based Cross-Species Comparison of DIPG Biology (Nazarian, Becher, Drissi, Hawkins).
  • Study 6 :  Imaging Phenotype and Survival in DIPG (Leach).
  • Study 7 : DIPG Secondary to MB/Ependymoma Therapy (Koschmann)

To learn more about the International DIPG Registry or how to submit a research proposal please contact the Registry office :

  • Telephone: 1-877-349-8074 or email:

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