DIPG Blog, News, and Articles

Characteristics of children ≤36 months of age with DIPG: A report from the international DIPG registry

As a supplement to the Journal of Clinical Oncology 2018 publishing from the International DIPG/DMG Registry and statistics of DIPG and DMG, the International DIPG/DMG Registry releases new age specific findings and long-term survival prognosis. Background Children ≤36 months with diffuse intrinsic pontine glioma (DIPG) have increased long-term survival (LTS, overall survival (OS) ≥24 months). Understanding distinguishing characteristics in this population is critical to improving outcomes. Meth

Are There Any Survivors of DIPG?

The following article first appeared on thecurestartsnow.org The diagnosis of diffuse intrinsic pontine glioma (DIPG) or diffuse midline glioma (DMG) is often casually regarded as a terminal cancer, but what are the true statistics regarding survival? For the first time since the classification of DIPG and DMG we now have these numbers due to the selfless participation of over 1,400 patients in the International DIPG/DMG Registry and the SIOPe (European) DIPG Registry. The largest linked databas

Research Update: CBD use in DMG

Abstract Diffuse midline gliomas (DMG) are highly invasive brain tumors with rare survival beyond two years past diagnosis and limited understanding of the mechanism behind tumor invasion. Previous reports demonstrate upregulation of the protein ID1 with H3K27M and ACVR1 mutations in DMG, but this has not been confirmed in human tumors or therapeutically targeted. Methods Whole exome, RNA, and ChIP-sequencing was performed on the ID1 locus in DMG tissue. Scratch-assay migration and transwell inv

Characteristics of patients ≥10 years of age with diffuse intrinsic pontine glioma: a report from the International DIPG/DMG Registry

As a supplement to the Journal of Clinical Oncology 2018 publishing from the International DIPG/DMG Registry and statistics of DIPG and DMG, the International DIPG/DMG Registry releases new age specific findings and long-term survival prognosis. Background Diffuse intrinsic pontine gliomas (DIPG) generally occur in young school-age children, although can occur in adolescents and young adults. The purpose of this study was to describe clinical, radiological, pathologic, and molecular characteris

Compassionate Use, Expanded Access, and Off-Trial Use of Treatments for DIPG / DMG

When confronting a diagnosis of DIPG / DMG, clinical trials are often the first resort beyond or concurrent with radiation for treatment options.  Although these trials may not offer a cure, phase 2 and phase 3 trials do offer a limited measure of comfort from life-threatening side effects.  But if these options don’t work, many patients find themselves weighing other options including phase 1 trials or even compassionate use opportunities where little to nothing may be known about the compound

Australian Researchers Find New Way to Target Deadly Childhood Cancer With CBL0137

The following article originally appeared on thecurestartsnow.org. Research by Australian scientists could pave the way to a new treatment for a currently incurable brain cancer in children called Diffuse Intrinsic Pontine Glioma, or DIPG. Affecting about 150-300 children in US each year, DIPG is a devastating disease with a median survival range of 8-11 months, according to DIPG.org. The research, led by scientists at Children’s Cancer Institute and published this week in the international jour

Steroids – Practical Advice from a Parent's Perspective

When a child is diagnosed with DIPG, they are commonly put on a steroid. Because of the location of DIPG , the high risk of the tumor swelling and causing more side effects, the use of steroids are necessary to help.  Steroids are an anti-inflammatory used to reduce swelling and inflammation around the tumor. “What we are using the steroids for in DIPGs is to calm the inflammation and swelling that you see after radiation” says Dr. Trent Hummel, Pediatric Neuro-Oncologist, Cincinnati Children’s

Practical Advice from Parents for Newly Diagnosed DIPG Families

A cancer diagnosis is difficult enough but when the diagnosis is for a child, it’s life-altering and one of the single most devastating events in a parent’s life. There is no set path to trek when handling a childhood cancer diagnosis. Advice from parents who have been down this road can provide hope and tips for handling treatment and making memories. We’ve compiled a list of advice and tips for newly diagnosed families based on responses we received from parents in our DIPG Facebook support gr

Breakthrough International Cancer Trial Halts Tumor Growth

The following article originally appeared on thecurestartsnow.org The Cure Starts Now Foundation funds novel trial that halts tumor growth in 2/3 of study CINCINNATI | February 18, 2021 – The Cure Starts Now announced that the Polyamine Pathway Metabolism as a Novel Therapeutic Option for Diffuse Intrinsic Pontine Glioma (DIPG) grant, funded in partnership with the DIPG/DMG Collaborative, has resulted in the identification of a potentially revolutionary new drug treatment for brain cancer. In

In the Lab with Dr. Carl Koschmann: Therapeutic Reversal of Pre-natal Pontine ID1 Signaling in DIPG

Researcher at the University of Michigan Hospitals The Cure Starts Now recently sat down with Dr. Carl Koschmann to discuss his research grant for Therapeutic Reversal of Pre-natal Pontine ID1 Signaling in DIPG. What is the purpose of your research? “Our aim is to get sequencing from as many spots as we could separate from the pons, where the tumor is located, and, effectively, get as much information as we could about each spot, while trying to figure out how the spots were different and how w

Translating Clinical Trials

This article originally appeared on thecurestartsnow.org Keith Desserich, Chairman of the Board at The Cure Starts Now, explains clinical trials – what they mean for cancer patients and how they work. Clinical trials are set up in phases, all designed to focus on an idea. We call these preclinical, or even translational research trials. They are designed to conduct testing on cancer cells in a test tube or mouse modeling.  Ultimately you are trying to determine whether or not this idea, this

DIPG Re-irradiation Side Effects and Considerations

The Cure Starts Now sat down with Dr. Luke Pater, Associate Professor of Radiation Oncology at the University of Cincinnati Department of Radiation Oncology and Cincinnati Children’s Hospital, to discuss re-irradiation in terms of DIPG, DMG and medulloblastoma. Recently families facing progression of DIPG, DMG and Medulloblastoma have received recommendations to consider re-irradiation, can you explain what this involves? Re-irradiation for brain tumors is very similar to the initial experien

Dr. Han Shen Discusses Overall Progress on his DIPG Research

This article originally appeared on thecurestartsnow.org Dr. Han Shen, Westmead Institute for Medical Research, AustraliaFunded Project: Targeting hypoxia and mitochondrial metabolism with repurposing drugs as an approach of radiosensitization for diffuse intrinsic pontine gliomasFunded Amount: $100,000 Dr. Shen provides an update on his recent project with the DIPG Collaborative and The Cure Starts Now and explains how it is providing clues to new treatment options for diffuse instrinsic po

DIPG Patient Database with the International DIPG/DMG Registry

Data by itself offers us no clues to beating cancer. Even as a result of diligent collection from a research trial it offers little more than a confirmation of hypothesis. But what happens when data gets together? What happens when you collect data organically, across platforms and at the source? There you can detect patterns, form new theories and even cure cancer. It’s not a novel idea to collect data. For hundreds of years researchers fighting every known disease have assembled facts collecte

What is the Difference Between DIPG and DMG and what is the H3K27M Histone Mutation?

DIPG (Diffuse Intrinsic Pontine Glioma) and DMG (Diffuse Midline Glioma) are often categorized together but can have different treatments that can lead to slightly different prognosis paths. Still, much of the science, the research, foundational funding and data for both types of brain tumors are grouped under DIPG, mainly because historically much of the work researching DIPG since around 2012 led to the reclassification and current definitions of DMG. DIPG is a type of brain tumor found in an

Making Memories After Diagnosis

Dealing with any brain cancer is never easy.  Often times it can be a battle between the clinical nature of treatments and quality of life as families struggle to adapt to the new norm.  As part of this struggle, it is customary to focus on making memories, whether facing a terminal diagnosis or not.  Even beyond creating memories, often these simple actions can provide an outlet both for children and parents that can take them “beyond the cancer” and even provide therapeutic or emotional stabil