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Development of the SIOPE DIPG network, registry and imaging repository: a collaborative effort to optimize research

Sophie E M Veldhuijzen van Zanten1, Joshua Baugh2, Brooklyn Chaney2

  • 1Department of Paediatrics, Division of Oncology/Haematology, VU University Medical Center, Amsterdam, The Netherlands. s.veldhuijzen@vumc.nl.

Journal of Neuro-Oncology
|January 23, 2017
PubMed

Insights

Diffuse intrinsic pontine glioma (DIPG) research is advancing through international collaboration. The SIOPE DIPG Network and Registry are improving data collection and understanding of this rare childhood cancer.

Area of Science:

  • Pediatric Oncology
  • Neuro-oncology
  • Cancer Research

Background:

  • Diffuse intrinsic pontine glioma (DIPG) is a rare and aggressive childhood brain tumor with a dismal prognosis.
  • Decades of single-center trials have failed to improve survival rates for DIPG patients.
  • There is a critical need for international collaboration to advance DIPG research.

Purpose of the Study:

  • To establish an international collaborative network for DIPG research.
  • To create a centralized, web-based database for collecting DIPG patient data and imaging.
  • To analyze initial data from the registry to understand survival outcomes.

Main Methods:

  • Formation of the SIOPE DIPG Network, uniting biologists, clinicians, and parents.
  • Development of the SIOPE DIPG Registry and Imaging Repository, a comprehensive international database.
  • Centralized collection of clinical data and MR scans from DIPG patients.

Main Results:

  • As of April 2016, 694 DIPG patients' data and MR scans were entered into the registry.
  • Median progression-free survival was 6.0 months (95% CI 5.6-6.4).
  • Median overall survival was 11.0 months (95% CI 10.5-11.5), with 2% alive at five years.

Conclusions:

  • The SIOPE DIPG Network and Registry represent a paradigm shift towards collaborative DIPG research.
  • This collaborative approach is essential for understanding DIPG, improving patient care, and ultimately finding a cure.
  • International cooperation is vital for advancing outcomes in rare pediatric brain tumors like DIPG.
Keywords:
CollaborationDiffuse intrinsic pontine glioma (DIPG)International research-infrastructureSIOPE DIPG networkSIOPE DIPG registry

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