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

Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorChildren's Hospital Medical Center, Cincinnati

About this trial

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.

Eligibility criteria

This trial does not accept healthy volunteers

Qualifiers

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.

Disqualifiers

None

Trial population

All patients of any age (living or deceased) with a diagnosis (either current or past) of a DIPG/DMG tumor.

Trial design

Design model

Cohort

Time perspective

Other

Treatments tested in this trial

Not listed

Trial groups

No trial groups listed

Trial outcomes

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.

Time frame
Through study completion, anticipated to be 25 years

Secondary outcomes

1

Identify genetic and molecular signature of diffuse intrinsic pontine gliomas and diffuse midline gliomas.

correlate registry data to a bioinformatics repository of molecular data on DIPG/DMG

Time frame
Through study completion, anticipated to be 25 years
2

Identify radiographic characteristics of DIPG/DMG

develop classification systems, uniform standards of diagnosis, assessment and response

Time frame
Through study completion, anticipated to be 25 years

Other outcomes

Sponsors and contacts

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