International Diffuse Intrinsic Pontine Glioma (DIPG) Registry and Repository

Official Title

International Diffuse Intrinsic Pontine Glioma (DIPG) Registry and Repository


Doctors and other medical scientists want learn about the biology of DIPG and to develop better ways to diagnose and treat patients with DIPG. To do this, they need more information about the characteristics of DIPG tumors. Therefore, they want to establish a central location for clinical information and tumor tissue collected from DIPG patients.

The purposes of this study are:

  • To enroll patients diagnosed with DIPG in the International DIPG Registry and Repository.
  • To provide a central location for clinical information, scans, and tissue samples from patients with DIPG enrolled in the registry.
  • To collect tissue samples in order to study how DIPG works on the molecular level. Researchers may use the tissue samples to study molecules such as proteins and DNA. Proteins are needed for the body to function properly and DNA is the molecule that carries our genetic information. Other researchers will be able to use the stored samples in the future to learn more about DIPG. The information researchers get from the research studies will be kept in the registry along with the clinical information.
  • To help DIPG investigators around the world to work together to make more consistent diagnosis and better design of future research studies. We hope this will lead to better treatments for DIPG in the future.

Trial Description

Primary Outcome Measures:

  • Identify the biological factors contributing to DIPG
Secondary Outcome Measures:
  • Identify genetic and molecular signature of diffuse intrinsic pontine gliomas.
  • Identify radiographic characteristics of DIPG
Biospecimen Retention:   Samples With DNA
Sources of tumor tissue may be from diagnostic biopsy, surgery or autopsy samples. Fresh tumor tissue may be utilized immediately for biological studies.

There are limited data regarding the biology of diffuse intrinsic pontine gliomas (DIPG). This project provides the infrastructure for acquisition of biological specimens, imaging, and correlative clinical data to facilitate biology studies in this group of patients. The goal of the DIPG registry is to promote collaborations amongst investigators to allow timely data and/or specimen dissemination for future research studies and to develop classification systems, uniform standards of diagnosis, assessment and response, ultimately leading to the development of effective therapies for children with DIPG.

This registry will collect clinical, demographic, radiological and pathological data and specimens (if available) from patients with DIPG, both prospectively (in newly diagnosed or currently living patients), as well as retrospectively (in patients who are deceased). Cases are identified through:

  • Existing clinical and/or cancer registry databases
  • Referrals from clinicians, surgeons, or pathologists
  • Families initiating contact with Registry staff directly

The following data/materials will be collected:

Clinical: Demographic data, date of diagnosis, signs and symptoms at diagnosis, laboratory data, detailed treatment data (e.g. types and dates of surgeries (if any), chemotherapy, radiotherapy), best response to treatment, dates of progression, types of progression (local or metastatic), and follow-up data.

Imaging: All radiographic imaging obtained since diagnosis will be requested at the time of study entry.

Pathology Central Review: If glass slides (stained or unstained) or paraffin blocks of tumor tissue (from biopsy or autopsy) are available, they will be requested at the time of registry entry but are not mandatory for enrollment.

Bioinfomatics repository: Collection of existing molecular and/or genomic data or analysis that has been performed as well as prospective analysis of tissue from the registry will be submitted to a central bioinformatics repository and may be linked to clinical data housed in the DIPG registry.

Tissue Collection and Storage for Future Research: If available, participants' frozen tissue may be submitted for banking and future research.

Data stored in the Registry may be used to provide statistical data for scientific presentations and for preparation of peer-reviewed manuscripts. No personal data can be traced to the study manuscripts or presentations. Data and specimens will be released for research proposals upon approval from the International DIPG Registry Committee.

The International DIPG Registry and Repository is not associated with any oncology group cooperative study or treatment trial.

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