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.
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:
March 18-19, 2011
This Symposium sponsored by the Cures Starts Now combined basic science and a clinical research.
Speakers and moderators included::
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.
Conference on DIPG – 7:28-12:50
February 26-27, 2011
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:
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.
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.
January 14-15, 2011
The purpose of this meeting was to establish collaboration between different European research groups. The invited participants were only from Europe.
This meeting was sponsored by the parent lead DIPG foundation – Semmy Foundation.
Agenda – http://www.fondoaliciapueyo.org/images/docanexos/Amsterdam_2011.pdf
February 26, 2009
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: