International DIPG Registry Update: August 2018
With collaborations with 106 academic medical centres, from 14 countries and the generous support of the DIPG Collaborative, the International DIPG Registry (IDIPGR) continues to grow and expand. From April 2012 to August 2018, 887 DIPG patients have been enrolled. We are now focusing on ensuring that all newly-diagnosed patients are given information about the Registry to maximize prospective enrolment.
Dr. Peter White, Chair of Bioinformatics at CCHMC, and his team have also developed the “LINKS platform” that allows linkage of clinical, imaging, pathologic and genomic data. The raw genomic data from DIPG samples from all over the world are housed in the VIVA repository/platform and currently includes genomics data on 140 samples. Investigators in the International DIPG Registry can request access to the LINKS platform and conduct their own queries, linking clinical, imaging, pathology and genomics data on patients in the International DIPG Registry. These queries can be used for hypothesis generation to conduct studies through the International DIPG Registry.
Seventeen projects using data/tissue from the IDIPGR investigators from around the world are currently underway.
The following manuscripts have been published (6):
- External validation of the diffuse intrinsic pontine glioma survival prediction model: a collaborative report from the International DIPG Registry and the SIOPE DIPG Registry
- The International Diffuse Intrinsic Pontine Glioma Registry: an Infrastructure to Accelerate Collaborative Research for an Orphan Disease.
- Development of the SIOPE DIPG Network, Registry and Imaging Repository: A collaborative effort to optimize research into a rare and lethal disease.
- Contemporary Survival endpoints: An International DIPG Registry Study.
- 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.
- Medulloblastoma therapy generates risk of a poorly-prognostic H3 wild-type subgroup of diffuse intrinsic pontine glioma: a report from the International DIPG Registry
The following projects were presented at ISPNO 2018 (3):
- Characteristics of patients ≥ 10 years of age with diffuse intrinsic pontine glioma: A report from the International DIPG Registry
- Clinical, radiological, pathological and molecular characteristics of children <3 years with diffuse intrinsic pontine glioma (DIPG): a report from the International DIPG Registry
- Medulloblastoma therapy generates risk of a poorly-prognostic H3 wild-type subgroup of diffuse intrinsic pontine glioma: A report from the International DIPG Registry
Investigators interested in submitting a research proposal to use Registry data and/or tissue, are encouraged to apply.