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This Forum has been generously sponsored by the Kira Spedale Foundation.

Diffuse Intrinsic Pontine Glioma

October 3–6, 2019

Chaired By

 Oren Becher, MD, Northwestern University
 Cynthia Hawkins MD, PhD, The Hospital for Sick Kids

Meeting Summary

In Summary (very briefly) how would you explain what was covered in this forum. Simplest terms.
The Forum was focused on a rare childhood brain cancer called DIPG, which stands for diffuse intrinsic pontine glioma. It is one of the most difficult cancers to treat due to its location and its infiltrating nature, so it cannot be removed with surgery. This is why it is still incurable in 2019. We brought in a diverse group of physicians and scientists that normally does not meet. This included neuro-oncologists, neurosurgeons, neuropathologists and basic scientists that study chromatin biology, tumor microenvironment, the challenges of delivering drugs to the brain, as well as those developing innovative approaches for this tumor. We discussed what we currently know about DIPG, what questions remain to be tackled, and what are barriers for the development of effective therapies and how to overcome them.

Why was this meeting relevant now?
The meeting was relevant now because there have been lots of scientific advances regarding the biology of DIPG but this new knowledge has yet to yield improved therapies for patients with DIPG. We met to address this gap between the science and the clinical management of children with DIPG and what steps can be taken to accelerate the quest for cure.

What came out of this meeting? Conceptual, collaborations any papers or experiments.
We are planning to write a review article on DIPG based on the discussions we had on some of the overarching questions in the field. The article will review the state of knowledge, address several important questions in the field highlighting areas of consensus or disagreement between attendees as well as summarize some new approaches in development. In particular, we will attempt to address a critical question regarding new therapies: what scientific knowledge regarding a specific new therapy is needed to have in advance of initiating a clinical trial for children with DIPG. As currently there are too many clinical trials for children with DIPG and the scientific rationale for all of these is quite variable.

What do you see developing in this field from this meeting?
I do believe that new collaborations will form from this meeting as well as conceptual advances. Several attendees already mentioned that they were not aware of the research conducted by some of the attendees and plan to reach out to them to potentially work together.

How does this impact patients today?
DIPG Families with children with DIPG currently struggle with choosing specific clinical trials for their children. It is possible that the dissemination of our future article will be informative to some families, and as a result, they will more critically assess the state of scientific knowledge of novel therapies to help them decide the best trial for their child. It makes sense that clinical trials based upon the most rigorous scientific rationale enroll patients the fastest.

Participant Information

Laura Bazazynski, PhD
UT Southwestern Medical Center
 Forbeck Scholar

Oren Becher, MD
Northwestern University

Wendy Beguelin
Weill Cornell Medicine

Gabrielle Bergers, PhD
Leuven Belgium

Kristina Cole, MD, PhD
Children's Hospital of Philadelphia

Courtney Crane, PhD
Seattle Childrens Research Institute

David J. Daniels, MD, PhD
Mayo Clinic

Ira Dunkel, MD
Memorial Sloan Kettering Cancer Center

William Elmquist, Pharm D, PhD
University of Minnesota

Jessica Foster
Children's Hospital of Philadelphia
 Forbeck Scholar

Dolores Hambardzumyan, PhD
Emory University

Cynthia Hawkins, MD, PhD
The Hospital for Sick Kids

Jeffrey Iliff, PhD
Oregon Health & Sciences University

Cassie Kline
University of California, San Francisco
 Forbeck Scholar

Paul S. Knoepfler, PhD
UC Davis Health

Nneka Mbah
University of Michigan
 Forbeck Scholar

Sabine Mueller, MD, PhD
University of California, San Francisco

Jay Sarthy
Fred Hutchinson Cancer Research Center
 Forbeck Scholar

Ali Shilatifard, PhD
Northwestern University

Nicholas Vitanza, MD
Seattle Children's Hospital / Fred Hutch

Meeting Description

DIPG is a rare incurable childhood brain cancer. Unfortunately, the standard of care has not significantly improved in over 50 years with focal radiation being the standard of care. This is in stark contrast to the improved treatments for many other cancers like melanoma, lung cancer, kidney cancer, leukemia, and neuroblastoma. Recent analysis of DIPG tumor tissue has identified some of the main genetic events that drive DIPG formation.

This powerful piece of knowledge, along with other advances such as the development of model systems, and the increasing use of biopsies as part of the diagnostic work-up for children with DIPG will eventually lead to effective therapies. This cannot be done however without foundations like the Forbeck Foundation. The Forbeck Foundation is world-renowned for supporting an innovative discussion forum where approximately 15 scientists, in an intimate setting, have the opportunity to discuss unpublished research results. Bringing together diverse experts together like this, to learn from and challenge each other, is an innovative approach that will no doubt yield real progress for DIPG.

Walk The Lake For Kira Faith

This year the Kira Spedale Foundation is collaborating with the Forbeck Foundation to sponsor a scientific forum to tackle DIPG. Walk the Lake will be the culmination of the consensus meeting. To learn more about the Kira Spedale Foundation please click here.