DIPG/DMG Registry Benefits for Newly Diagnosed Families
In order to find effective treatments for Diffuse Intrinsic Pontine Glioma (DIPG), researchers first need a better understanding of how the disease works. But because DIPG is so rare, affecting approximately 150-300 patients every year, most hospitals see very few patients with these tumors, making it difficult for researchers to collect adequate information to effectively look for new therapies.
This is where the International DIPG/DMG Registry comes into play. It acts as a centralized resource that provides researchers with clinical information about DIPG patients, as well as their imaging (scans) and any available tumor samples. It is a collaborative effort of over 110 institutions from around the world working together to achieve a central goal - finding the cure for DIPG.
It is important that families of recently diagnosed patients register to be a part of the DIPG/DMG Registry. By joining, you are providing vital information that effectively helps direct future clinical trials and innovative strategies. Additionally, you will gain access to beneficial information and resources that can help guide you through diagnosis, treatment, and progression.
Benefits of Joining for Patients
The International DIPG/DMG Registry is for the benefit of the patient. As part of this unparalleled effort, the Registry provides vital resources to patients and parents in the fight.
- Resources to help provide second opinions free of charge
- Centralized review of MRIs to help minimize misdiagnoses
- Access to a network of the top hospitals specializing in DIPG
- A source of information about DIPG, including the biology of the disease, symptoms and diagnosis, current treatment approaches, and ongoing and planned research
- The opportunity to contribute to our knowledge about DIPG and to potentially help future patients by enrolling patients in the registry
- Links to additional resources
What information does the Registry collect?
The data collection is patient-focused, with a committee specifically designed to offer feedback on-field management so that it can be responsive to new trends and additional data submissions. Each patient entry is subject to genomic and tissue analysis, and over 400 clinical questions. Overall this leads to thousands of data set collection measures on over 1100 patients worldwide. As one of the most extensive patient registries in the world, this delivers hundreds of new treatment paths, some of which are still unknown, and a foundation of data that is sure to revolutionize not only DIPG research but cancer research in general.
DIPG tissue samples are used for studies to help researchers learn more about what causes pediatric brain tumors and how to make treatment better for those with this disease. There are two ways a tissue sample can be collected, either through a biopsy or autopsy tumor donation. The biopsy option, typically taken at the time of diagnosis, offers conclusive information that can confirm the diagnosis, while tumor donation is performed through a limited autopsy upon death. Both are very personal decisions that are left up to the family. Choosing not to have a biopsy or donate the tumor will not result in exclusion from the DIPG/DMG Registry.
How to Enroll?
Enrollment is a simple process. All you need to do is visit dipgregistry.org and click on the How To Enroll button at the top of the page. There you can sign up, even if your hospital didn't present the option at diagnosis, and the Registry team will reach out on your behalf to start the process.
Already enrolled? You can confirm that you or your child is in the registry simply by calling the phone number on the website or sending a message – it's that easy.
Want to learn more? Visit dipgregistry.org, where you'll find an abundance of data and information about the diagnosis, along with resources at your fingertips. If you still have questions, please don’t hesitate to call or send a message using the phone number and email on the website.