February 2012
Barcelona, Spain

On February 24nd the discussion was focused on biopsy or not biopsy these patients, as well as the information which can be obtained from these samples. Dr. Stephanie Puget, from Necker Hospital in Paris, presented again her outstanding results after more than 80 patients biopsied. In brief, her group will begin a clinical trial with different treatments based on the molecular alterations detected in samples obtained from biopsy at diagnosis.

On the other hand, the great possibilities opened in the knowledge of the disease thanks to the complete sequencing of the samples obtained from biopsies and autopsies, were stressed. Information obtained through this technique will reveal all the molecular alterations that characterize these tumors and will allow to move towards the definition of more effective treatments with new biological therapies.

As expected, not all participants agreed to include the biopsy as standard procedure for this tumor, given the risks of significant side effects and doubts about the benefit for the patient, beyond the contribution to the knowledge of this disease.

Finally, attendants tried to advance towards the creation of a European collaboration network, with the aim of creating a common register of all patients to centralize all available information. Regarding the possibility of defining a common treatment protocol for all of Europe, attendants agreed that it is too early for this, being needed additional time to demonstrate the better effectiveness of an option over another. However, there was full consensus on the desirability of limiting the use of steroids as much as possible and even eliminating them from the treatment if the child’s symptoms allow it.

In conclusion, although we are still far from achieving a cure, there are several promising projects for the future and it is clear that the necessary international cooperation among the groups involved are activated significantly in recent years.

Agenda-
DIPG_meeting_agenda_feb_2012.pdf

Powerpoints from Workshop-
101 – Welcome, introduction and goals (Mora).pdf
102 – Action Points Amsterdam Meeting (Van Vuurden-Cruz).pdf
103 – ITALY – Nimotuzumab-Vinorelbine Study (Schiavello).pdf
104 – POLAND – CisTem Protocol (Perek-Polnik).pdf
105 – SPAIN – Irinotecan Cisplatin Protocol (Cruz).pdf
106 – FRANCE – Cilengitide Study (Leblond).pdf
201 – SPAIN – Virotherapy CED (Montero).pdf
202 – SPAIN – Oncolytic Adenovirus (Alonso).pdf
203 – SPAIN – Intra-arterial Chemotherapy in DIPG (Sola).pdf
204 – BELGIUM – Immunotherapy (Van Gool).pdf
301 – SPAIN – Biopsy and Autopsy (Mora).pdf
302 – FRANCE – DIPG Biopsy Technique (Puget).pdf
303 – NETHERLANDS – Histopathology of DIPG (Wesseling).pdf
304 – UK – Molecular Biology – What To Do With Tissue (Chris Jones).pdf
401 – NETHERLANDS – DIPG Network and Registry (Van Vuurden).pdf
402 – Action Points Barcelona Meeting (Cruz-Van Vuurden).pdf

October 6-7, 2011
NIH- Bethesda, MD

A major obstacle has been the lack of tissue for biological study as biopsy of these lesions is not the standard of care. Recent studies on autopsy tissue have demonstrated genomic abnormalities involving targets for which antitumor agents exist. These studies have also demonstrated the heterogeneity amongst DIPG patients. This meeting is a consensus meeting amongst physicians caring for children with DIPG. The objective is to come to agreement as to whether or not biopsy should be performed in these children.

Included in the agenda was the development of an International DIPG registry.

Speakers and Moderators:

• Kathy Warren- neuro oncology NIH
• Russ Lonser- neurosurgery- NIH
• John Kestle- neurosurgery- Utah
• Nicholas Foreman-neuro oncology Denver
• Mark Kieran- neuro oncology- Boston
• Peter Berger- neuropathology- Hopkins
• Cynthia Hawkins- neuropathology-Toronto Canada
• Michelle Monje- neuro oncology and stem cell researcher- Stanford
• Oren Becher- neuro oncology and diverse DIPG researcher- Duke
• Stefanie Puget- neurosurgery- France
• Mike Handler- neurosurgery- Denver
• Sam Browd- neurosurgery – Seattle
• Zoltan Patany- neuroradiology- St Jude
• Will Parsons- neuro oncology- Houston, TX
• Maryam Fouladi- neuro oncology- Cincinnati
• Paul Meltzer- NIH
• Ping Zhaung
• Jinu Abraham- OHSU
• Melinda Merchant- NIH
• Cynthia Wetmore- neuro oncology- St Jude
• Ian Pollack- neurosurgery- Pittsburgh
• Fred Boop- neurosurgery- St Jude
• Daphne Kogen Haas- radiation oncology- UCSF

Agenda- http://web.ncifcrf.gov/events/DIPG/agenda.pdf

March 18-19, 2011
Cincinnati

This Symposium sponsored by the Cures Starts Now combined basic science and a clinical research.

Session topics:

• New insights into biology and genetics
• Novel targeting of signaling and metabolic pathways
• New directions in clinical trials
• New approaches to drug/small molecule delivery
• New paradigms in immunological targeting
• New approaches in molecular imaging for diagnosis, classification and response assessment
• Novel clinical trial designs

Speakers and moderators included::

• Gavin Baumgardner, DO – The Cure Starts Now Medical Advisory Council Chairman
• Oren Becher, MD – Duke University Medical Center
• Darrell Bigner, MD, PhD – Duke University Medical Center
• Alberto Broniscer, MD – St. Jude Children’s Research Hospital
• Carlo Croce, MD – Ohio State University Comprehensive Cancer Center
• Maryam Fouladi, MD, FRCP – Cincinnati Children’s Hospital Medical Center
• Mark Gilbert, MD – MD Anderson Cancer Center
• David Giljohann, PhD – Northwestern University
• Stewart Goldman, MD – Children’s Memorial Hospital, Chicago
• Peixuan Guo, PhD – University of Cincinnati College of Medicine
• Darren Hargrave, MD – The Royal Marsden / NHS Foundation Trust
• Cynthia Hawkins, MD, PhD – Hospital for Sick Children, Toronto, Canada
• Trent Hummel, MD – Cincinnati Children’s Hospital Medical Center
• Mark Kieran, MD, PhD – Children’s Hospital of Boston
• Roger Packer, MD – Children’s National Medical Center
• Will Parsons, MD, PhD – Texas Children’s Cancer Center
• Barbara Paugh, PhD – St. Jude Children’s Research Hospital
• John Perentesis, MD, FAAP – Cincinnati Children’s Hospital Medical Center
• Heidi Phillips, PhD – Genentech
• Tina Young Poussaint, MD – Children’s Hospital of Boston
• Mike Prados, MD – University of California, San Francisco
• Jeremy Rich, MD – Cleveland Clinic
• Malcolm Smith, MD, PhD – National Cancer Institute, CTEP
• George Thomas, PhD – University of Cincinnati College of Medicine
• Katherine Warren, MD – National Cancer Institute

Sponsorship for sessions came from numerous DIPG and pediatric brain tumor foundations including- Reflections of Grace, Smiles for Sophie, Benny’s World, Mark Jr’s Glioma Foundation, Morgan Adams Foundation, Shemenski Foundation, Carly’s Crusaders, Riah’s Rainbow, Max Lacewell Foundation, Jeffery Thomas Hayden Foundation, Cure Starts Now, (including several individual chapters) and Cancer-Free Kids. In addition, several other advocate participants were included in the meeting.

The Cristian Rivera Foundation was in attendance and financially supported the endeavors of the conference.

Agenda- http://www.fondoaliciapueyo.org/images/docanexos/Cincinatti_2011.pdf

Podcast-
Conference on DIPG – 7:28-12:50
http://www.nbglobe.com/2011/05/08/twipo-4-meetings-recap-and-immunotherapy-for-synovial-cell-sarcoma/

February 26-27, 2011
Toronto, Canada

This two day workshop sponsored by the physicians at Sick Children’s brought together DIPG researchers and advocates for the first time. There were approximately 45 researchers and 10 advocates. The first day split the researchers and the advocates for specific discussions.

The first day expert sessions included:

• Radiology – facilitated by Gilbert Ve´zina, Washington, DC
• Radiation oncology – facilitated by Larry Kun, Memphis, TN
• Medical oncology (headed by Ute Bartels, Toronto and Eric Bouffet, Toronto, ON, Canada
• Neurosurgery- facilitated by Mark Souweidane, New York, NY
• Pathology and biology – facilitated by Cynthia Hawkins, Toronto, ON, Canada

The 2nd day was an exchange of experts with advocates (headed by Ute Bartels) followed by a Think Tank summary and outline of consensus from the speakers and participants.

Advocate Participants:

• Stan and Marisa Bertoia- Skate With Daniel
• Keith Desserich- Cure Starts Now
• Gloria Garcia- Fondo Alicia Pueyo
• Ruth Hoffman- American Childhood Cancer Organization (formerly Candlelighter’s)
• Linda Pohly- Musella Foundation and The Grey Ribbon Crusade
• Susan Rooney- Just One More Day
• Kim Spady- Just One More Day
• Joan Slaughter- Morgan Adams Foundation
• Jeanne Young- Childhood Brain Tumor Foundation

This workshop was funded through a joint effort from Just One More Day, www.justonemoreday.org and b.r.a.i.n. child (brain tumour research assistance and information network. www.sickkids.ca/brainchild

Abstract- Proceedings of the diffuse intrinsic pontine glioma (DIPG) Toronto Think Tank: advancing basic and translational research and cooperation in DIPG.
J Neurooncol. 2011 Oct;105(1):119-25. Epub 2011 Sep 8.
http://www.ncbi.nlm.nih.gov/pubmed?term=Toronto%20DIPG%20Think%20Tank

January 14-15, 2011
Amsterdam

The purpose of this meeting was to establish collaboration between different European research groups. The invited participants were only from Europe.

Participants:

• Darren Hargrave – UK
• Chris Jones – UK
• Simon Bailey – UK
• Stefan Van Gool – Belgium
• Ofelia Cruz Martinez – Spain
• Christoph Kramm – Germany
• Iacopo Sardi- Italy
• Richard Grundy- UK
• Sebastian Pons-Spain
• Geert Janssens- Netherlands
• Corrie Gidding- Netherlands
• Ioannis Roussos- Spain
• Veronica Biassoni- Itally
• Olaf van Tellingen- Netherlands
• Otto Hoekstra- Netherlands
• Dannis van Vuurden- Netherlands
• Ester Hulleman- France
• Marc Jansen- Netherlands

This meeting was sponsored by the parent lead DIPG foundation – Semmy Foundation.
www.pontineglioma.com

Agenda – http://www.fondoaliciapueyo.org/images/docanexos/Amsterdam_2011.pdf

February 26, 2009
Barcelona, Spain

Prior to 2009 there had been no professional conference exclusively focusing on diffuse intrinsic pontine glioma. This changed when ten DIPG researchers met in Barcelona Spain for the Alicia Pueyo Memorial DIPG Workshop coming together to discuss a common international/inter-disciplinary research agenda. This workshop took place because of the funding from the Alicia Pueyo Fundo. http://www.fondoaliciapueyo.org/e_inicio.php

Each workshop participant made a 30 minute presentation which was videotaped and available through the CRF website.

Workshop Participants/Video Presentation:

• Ofelia Cruz- HSJD Barcelona- DIPG A Clinical Introduction
• Darren Hargrave- Royal Marsden, UK- To Biospy or Not Biopsy/UK DIPG investigation
• Mark Kieran- Boston, US- Molecular targeted therapy for DIPG using biopsy
• Sebastian Pons- Barcelona- Origin of Brainstem Tumors
• Joan Seoane- Barcelona- Molecular Gliomagenesis
• Ioannis Roussos- Barcelona- Animal Models of Brainstem Tumors/Drug Delivery
• Alberto Broniscer- St Jude US- St Jude New Clinical Trials
• Sri Gururangan- Duke US- Phase I testing in DIPG patients
• Manuel Ramirez- Madrid Spain- Gene Therapy Strategies
• Viola Caretti- Amsterdam- Novel Therapeutics and Targeted Delivery

Agenda- http://www.justonemoreday.org/DIPGConference/DIPGConference.html