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International DIPG/DMG Registry and Repository

This study is creating a central collection of information and tumor tissue from people with Diffuse Intrinsic Pontine Glioma (DIPG) and Diffuse Midline Glioma (DMG). Doctors want to learn more about these tumors, including their biological factors, to find better ways to diagnose and treat them. This registry will help researchers understand how DIPG/DMG works at a molecular level, specifically looking at the RAF mechanism. Anyone, of any age, who has been diagnosed with DIPG/DMG (either currently or in the past) can participate. The main goal is to identify the biological factors that contribute to these conditions, with data collection planned for 25 years.

Study design
This is an observational study aiming to enroll 1500 participants. It is designed to collect information and samples without testing a specific intervention.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
The study aims to identify biological factors contributing to DIPG/DMG through study completion, anticipated to be 25 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT03101813

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

Recruiting
Not specifiedAll AgesObservational
Children's Hospital Medical Center, Cincinnati
~1,500 participants
Updated 2025-10-20 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Identify the biological factors contributing to DIPG/DMG
Measured over Through study completion, anticipated to be 25 years

Conditions

Diffuse Intrinsic Pontine Glioma
Diffuse Midline Glioma, H3 K27M-Mutant
Diffuse Midline Glioma

Explore related trials

Diffuse Intrinsic Pontine GliomaDiffuse Midline GliomaH3 K27M Variant

Where it's being run

1 sites across 1 states
Ohio1

Study leadership

  • Lindsey Hoffman, DO · STUDY_CHAIR · Phoenix Children's Hospital
  • Trent Hummel, MD · PRINCIPAL_INVESTIGATOR · Children's Hospital Medical Center, Cincinnati

Who to contact

DIPG/DMG Operations Team
[email protected]
1-877-349-8074
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

All patients of any age (living or deceased) with a diagnosis (either current or past) of a DIPG/DMG tumor
Unless the patient is deceased, all patients and/or one parent or legal guardian must provide written informed consent as well as HIPAA/release of information consent.

What this trial measures

  • Identify the biological factors contributing to DIPG/DMGThrough study completion, anticipated to be 25 years

    To implement a central repository for clinical, radiological, pathological and demographic data and specimens from patients with DIPG.