Diagnosed with DIPG or DMG?
Welcome to the DIPG/DMG Toolbox
- A free resource sponsored by parents/patients like you
When you or your child is diagnosed with DIPG or DMG, there are a few steps that can provide direction and help with treatment options. The good news is that you don’t have to do it alone! Below are some simple steps to build your toolbox and team to help beat DIPG/DMG.
1. Get a FREE records review from a physician that specializes in DIPG/DMG
Since 2012, the International DIPG/DMG Registry has provided over 430 patient-to-doctor records reviews discussing treatment options and helped to connect families to local experts in DIPG/DMG. The dominant DIPG/DMG registry with over 1800 DIPG/DMG specific patient participants and 117 participating hospitals in over 17 countries, the Registry (through a grant by the DIPG/DMG Collaborative parent/foundational group) can provide an initial records review within 3 business days with a DIPG/DMG specialist doctor and then more detailed analysis upon receipt of patient records from your local hospital. Records reviews are free and can be requested here. A family advocate will contact you within 24 hours to help with next steps.
Please note: Reviews are only guaranteed in USA, Canada, and Australia. Other countries may be available, but cannot be guaranteed. Request a review to learn more.
Dr. Lindsey Hoffman
Chair of the International DIPG/DMG Registry
Dr. Trent Hummel
Principle Investigator of the International DIPG/DMG Registry
Dr. Stewart Goldman
Chair Emeritus of the International DIPG/DMG Registry
2. Enroll in the DIPG/DMG Registry and confirm your diagnosis for FREE
Recent data suggested that up to 19% of all DIPG cases may exhibit an “abnormal” appearance through a centrally reviewed MRI that could substantially change treatment options. And while certainly a biopsy can help, alone, a non-invasive peer-review of a simple MRI by the International DIPG/DMG Registry’s team caught a misdiagnosis rate of 7% in a recent published report. When you enroll in the Registry and radiological reports and submitted by your treating hospital, they are reviewed and if an abnormal status exists, a member of the Registry will reach out to your doctor to discuss. Enrollment in the Registry is required in order to provide this service.
By doing so you are allowing your child’s records, MRIs and file to be shared with the largest database on DIPG/DMG. Not only will this help in advancing future treatments, but it will allow your doctor to tap into the largest library of trials and data in an effort to help your child.
Please note: Diagnosis confirmation is only guaranteed in USA, Canada, and Australia. If you reside within another country, please email us at [email protected]
Learn more at dipgregistry.org
3. Subscribe to the DIPG.org Trial Finder
DIPG/DMG is a difficult diagnosis, but you don’t have to fight it alone. That’s why we created the DIPG/DMG Trial Finder. Realizing that we don’t have the cure yet, we believe the best way to help is to give you all the tools to win – not just ones that are local or familiar. That's why we've invested in an intelligent database that scours the globe for all relevant DIPG/DMG trials and delivers fresh to your door daily, updates about new trials or changes to current ones. Faster than most doctors or hospitals, you’ll know about trial openings first and be able to have a productive conversation with your treating physician on what is best for you. It’s all FREE and designed to the put the power in your hands!
4. If a biopsy is recommended, ask that it is sent to a genetic panel as well as the DIPG/DMG Registry
Sometimes not only can you develop a better understanding of the tumor from a comparative with other DIPG/DMG tumors, but you may find certain traits that will open up new options for treatments.
5. Join the DIPG or DMG Warrior Program
By joining the DIPG or DMG Warrior program, you can get personalized one-on-one support from another DIPG/DMG parent that has been in your shoes. If you can't find the information you're looking for, or are overwhelmed by all the resources, this is a great place to start. The program can also help connect you with hundreds of other DIPG/DMG families. Best of all, when you join you’ll be connected to a Family Support Specialist to help you through this battle and be able to draw on the resources of a 600+ family network!
6. Get Online and Get Educated
The good news is that you’re already here! DIPG.org is the leading source for all things DIPG/DMG with hundreds of thousands of visitors since inception. Here you’ll find educational videos, doctor authored content, updates on new research developments and links to all relevant resources in the community. All information is factual and even interactive. Looking for something more? Join the Facebook group DIPG/DMG Support for Families to ask a question. Moderated by the team behind DIPG.org and the 600+ families in the fight, this group is a “safe space” without bias for families only to discuss your own questions, get updates and find answers.
We're Here for You!
Starting in 2012 when DIPG/DMG had no community and few experts, a unique coalition of doctors, foundations and families joined forces to form the largest team to fight these cancers that many believe will lead to strategies to fight all cancers. This group includes:
The International DIPG/DMG Registry – The leading DIPG/DMG centric registry combining the resources of 117 hospitals in 17 different countries, its work has led to the identification of many mutations and patterns which have formed the foundation of many of the trials in development today. More than just a Registry to help researchers, it also encompasses patient support, helping both with records reviews and confirmation of diagnosis. Different than many other registries which are built from smaller, inconclusive trial databases, the International DIPG/DMG Registry is one of the only registries that specializes in organic data collected direct from the patient and linked so that we can find patterns naturally. To learn more, visit www.dipgregistry.org
The SIOPe DIPG/DMG Registry – Similar and complementary to the International DIPG/DMG Registry, this network brings together the resources of many European countries in association with the leading consortium of SIOPe. Evolving from a common grant in 2011, the SIOPe Registry was separated mainly due to privacy law requirements of the EU in 2015. Today they work with the same platform of data and share between both registries. To learn more, visit www.dipgregistry.eu
The DIPG/DMG Collaborative – The leading DIPG/DMG foundational partnership with over 24+ independent foundations joining forces to fund over $13 million in grants. Started in 2012 in response to the International DIPG/DMG Symposium, today it helps to define strategy and focus by harnessing the differing perspectives of foundations that fund adult research, pediatric research, family support and awareness for brain cancers. To learn more, learn about resources within the collaborative, or to join visit www.dipgcollaborative.org.
The Cure Starts Now Foundation – The largest DIPG/DMG foundation worldwide with 38 Chapters and growing with locations in 3 countries, 40+ Ambassador Families, and 600+ Warrior Families. Together with the Collaborative (it is the administrator of the DIPG/DMG Collaborative), The Cure Starts Now has funded over $26 million and helped create over 119 projects worldwide. To learn more, visit www.thecurestartsnow.org.
See also:
- Practical Advice from Parents for Newly Diagnosed DIPG Families
- Want more information? Check out this article about what to do when diagnosed.