In November, Dr. Carl Koschmann presented data on his project with the International DIPG Registry at the annual Society of Neuro-oncology (SNO) meeting. Entitled, “Diffuse Intrinsic Pontine Glioma as a Secondary Malignancy: a Report from the DIPG Registry and Review of the Literature”, the goal of this study is to better understand the risk of developing a secondary cancer after radiation in the form of DIPG.

The full abstract can be read online here.

Currently there are 8 other approved research studies:

  • Joint International DIPG Registry and SIOPe DIPG Registry long-term survivor project
  • External validation of the survival prediction model for DIPG
  • DIPG Survival Endpoints
  • An epidemiological study to determine incidence patterns of DIPG in North America 2000-2010
  • Establishment of in vitro and in vivo Models
  • Comprehensive Molecular-Based Cross-Species Comparison of DIPG Biology
  • Imaging Phenotype and Survival in DIPG
  • Radiogenomic Evaluation in Diffuse Intrinsic Pontine Glioma

To date, 670 patients have been enrolled. 55 academic medical centers from 7 countries around the world have now agreed to collaborate, including locations in US, Canada, Australia, New Zealand, Brazil, Argentina, Lebanon, and China.  The radiology repository contains over 3500 studies on 541 patients. The pathology repository contains tissue on approximately 81 patients. Molecular data is available on 66 patients.

For questions regarding the International DIPG Registry and Repository or how to submit a research proposal please contact:

  • Telephone: 1-877-349-8074
  • Email:

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