Actively Recruiting
International Diffuse Intrinsic Pontine Glioma (DIPG) and Diffuse Midline Glioma (DMG) Registry and Repository
Led by Children's Hospital Medical Center, Cincinnati · Updated on 2025-10-20
1500
Participants Needed
1
Research Sites
521 weeks
Total Duration
On this page
Sponsors
C
Children's Hospital Medical Center, Cincinnati
Lead Sponsor
T
The DIPG Collaborative
Collaborating Sponsor
AI-Summary
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 DIPG/DMG 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 DIPG/DMG. 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 DIPG/DMG.
CONDITIONS
Brief Title
International Diffuse Intrinsic Pontine Glioma (DIPG)/Diffuse Midline Glioma (DMG) Registry and Repository
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patients of any age (living or deceased) diagnosed with a DIPG or DMG tumor
- If living, patient or parent/legal guardian must provide written informed consent and HIPAA/release of information consent
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or remote) for registration and consent
Duration - Ongoing throughout study participation
Participants' clinical, demographic, radiological, and pathological data and specimens are collected for registry entry and research.
1 visit for data and specimen submission; additional submissions possible
Duration - Up to 25 years
Participants' existing and future clinical and imaging data are collected and monitored for research purposes over the course of the study.
Data collection occurs as available; no scheduled visits required
Trial Site Locations
Total: 1 location
1
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, United States, 45229
Actively Recruiting
Research Team
D
DIPG/DMG Operations Team
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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