International Diffuse Intrinsic Pontine Glioma (DIPG)/Diffuse Midline Glioma (DMG) Registry and Repository
1 other identifier
observational
1,500
1 country
1
Brief Summary
Doctors and other medical scientists want learn about the biology of DIPG/DMG and to develop better ways to diagnose and treat patients with DIPG/DMG. To do this, they need more information about the characteristics of DIPG/DMG tumors. Therefore, they want to establish a central location for clinical information and tumor tissue collected from DIPG/DMG patients. The purposes of this study are:
- To enroll patients diagnosed with DIPG/DMG in the International DIPG/DMG Registry and Repository.
- To provide a central location for clinical information, scans, and tissue samples from patients with DIPG/DMG enrolled in the registry.
- To collect tissue samples in order to study how DIPG/DMG 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/DMG. The information researchers get from the research studies will be kept in the registry along with the clinical information.
- To help 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/DMG in the future.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Jun 2012
Longer than P75 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
June 1, 2012
CompletedFirst Submitted
Initial submission to the registry
March 8, 2017
CompletedFirst Posted
Study publicly available on registry
April 5, 2017
CompletedPrimary Completion
Last participant's last visit for primary outcome
June 1, 2037
ExpectedStudy Completion
Last participant's last visit for all outcomes
June 1, 2047
October 20, 2025
October 1, 2025
25 years
March 8, 2017
October 16, 2025
Conditions
Outcome Measures
Primary Outcomes (1)
Identify the biological factors contributing to DIPG/DMG
To implement a central repository for clinical, radiological, pathological and demographic data and specimens from patients with DIPG.
Through study completion, anticipated to be 25 years
Secondary Outcomes (2)
Identify genetic and molecular signature of diffuse intrinsic pontine gliomas and diffuse midline gliomas.
Through study completion, anticipated to be 25 years
Identify radiographic characteristics of DIPG/DMG
Through study completion, anticipated to be 25 years
Eligibility Criteria
All patients of any age (living or deceased) with a diagnosis (either current or past) of a DIPG/DMG tumor.
You may qualify if:
- 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.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, 45229, United States
Related Links
Biospecimen
Sources of tumor tissue may be from diagnostic biopsy, surgery or autopsy samples. Fresh tumor tissue may be utilized immediately for biological studies.
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- STUDY CHAIR
Lindsey Hoffman, DO
Phoenix Children's Hospital
- PRINCIPAL INVESTIGATOR
Trent Hummel, MD
Children's Hospital Medical Center, Cincinnati
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- OTHER
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
March 8, 2017
First Posted
April 5, 2017
Study Start
June 1, 2012
Primary Completion (Estimated)
June 1, 2037
Study Completion (Estimated)
June 1, 2047
Last Updated
October 20, 2025
Record last verified: 2025-10
Data Sharing
- IPD Sharing
- Will share
Clinical, radiographic, pathologic, genomic data and biological specimens may be released to qualified investigators after a subset of the study committee for this protocol has judged their proposals for scientific merit, clinical priority, and feasibility. Patient-identifying data/specimens will never be released to investigators. If the use of the samples and/or data released from the repository constitutes human subjects research per 45 CFR 46 or genetic research, IRB approval will be required to be submitted with the investigator's application.