DIPG/DMG Registry (brainstem tumors)

Clinical study into the development and treatment of tumors in and around the brainstem.

Recruiting

Who can enter

Children/ adolescents/ adults with a tumor in or around the brainstem (DIPG/DMG)

Goal

The goal of this study is to collect data about the disease and treatment of all patients with DIPG/DMG in Europe.

Background

Brainstem tumors are malignant. When the tumor is located in the brainstem, we call the tumor a DIPG. And when the tumor is located on the midline of the brain or in the spinal cord, we call the tumor a DMG. Treatment options for patients with DIPG/DMG are limited. Therefore, a group of pediatric oncologists wants to learn more about these diseases.

They have developed the DIPG/DMG Registry. In a registry, data of patients with DIPG/DMG are collected in a structured way in one file. With this registry, we hope to be able to answer questions like:

How often does DIPG/DMG occur in Europe?
What are the effects of different treatments?

Comprehensive data will be collected. For example:

Medical data: age, symptoms, other diseases
Characteristics of the tumor
Data regarding the treatments
MRI images

With data from the DIPG/DMG Registry we hope to get more insight into the disease.

This study only collects data. The study does not effect the treatment of patients with DIPG/DMG.

In order to participate in a study please refer to your/your child’s doctor.

Last reviewed

August 18, 2022

Study details
Official title
A SIOPE Registry for Diffuse Intrinsic Pontine Glioma (DIPG) and Diffuse Midline Glioma (DMG)
Cancer type
- Diffuse Intrinsic Pontine Glioma (DIPG)
- Diffuse Midline Glioma (DMG)
Start date
October 1, 2018
Status
Open
Local principal investigator
Dr. D.G. van Vuurden
Sponsor
SIOPE DIPG/DMG Network
Approval
This study has been reviewed and approved by the internal scientific committee (Clinical Research Committee) of the Princess Máxima Center. An accredited medical research ethics committee waived the need for official approval according to the Medical Research Involving Human Subjects Act (WMO), and is therefore not further involved in the review of the research. This is only done for studies with low risk or low patient burden. More information can be found at: CCMO.