INTERNATIONAL DIPG REGISTRY UPDATE (July 2016)

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.

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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: referrals@dipgregistry.org

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