There are limited data regarding the biology of diffuse intrinsic pontine gliomas (DIPG)
and diffuse midline gliomas (DMG). 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/DMG 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/DMG.
This registry will collect clinical, demographic, radiological and pathological data and
specimens (if available) from patients with DIPG/DMG, 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.
Bioinformatics 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/DMG 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/DMG Registry Committee.
The International DIPG/DMG Registry and Repository is not associated with any oncology
group cooperative study or treatment trial.
