International Registry and Repository for Patients With Diffuse Intrinsic Pontine Glioma DIPG and Diffuse Midline Glioma DMG

What this Trial Is About

Researchers are studying diffuse intrinsic pontine glioma DIPG and diffuse midline glioma DMG to better understand these brain tumors and improve diagnosis and treatment. This observational study aims to gather detailed clinical information, tumor tissue samples, imaging, and molecular data to learn how DIPGDMG works at a biological level. The study also seeks to create a central registry to support worldwide collaboration and future research for these conditions. The study collects clinical data like demographics, diagnosis dates, symptoms, treatments such as surgery, chemotherapy, and radiation, and follow-up outcomes. Imaging and pathology samples from biopsies or autopsies will be gathered if available, though not required for participation. Molecular and genetic data from tumor tissues will be stored in a central bioinformatics repository to facilitate research. Both living patients and those who have passed away may be included, with data collected retrospectively or prospectively. Participants or their guardians will provide consent, and data will be securely stored without personal identifiers. Researchers will review scans, clinical histories, and tissue samples to identify biological and radiographic factors related to DIPGDMG. Data may support scientific presentations and research proposals approved by the registry committee. The study is expected to continue for up to 25 years, aiming to develop better diagnostic and treatment approaches for DIPGDMG.

International Diffuse Intrinsic Pontine Glioma (DIPG)/Diffuse Midline Glioma (DMG) Registry and Repository