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I Gliomatosis Cerebri Congress (París, 2015)

A historic date. This first international meeting was organized and funded by five associations of European and North American GC families and was held from March 26 to 27, 2015 in Paris, France. It brought together researchers and medical experts, from centers dedicated to pediatric and adult neurooncology.

The congress was funded and organized by five families, whose children died to gliomatosis cerebri, and who created their respective associations to support and inform other affected people, and try to find a way towards the effective treatment of the disease.

An initiative by Izas, la princesa guisante, created in 2013 in Huesca, supported by four more associations from around the world that fight to fight the disease: the French association Franck, un rayon de soleil, and the American assotiThe AYJ Fund, The Joshua project and Elizabeth´s Hope.

Hospital Sant Joan de Deu in Barcelona, ​​a reference center of the GC in Spain, was in charge of the medical organization of the congress. It also collaborates from the beginning with Izas, la princesa guisante. Dr. Andrés Morales, pediatric neuro-oncologist at this hospital, managed to involve as congress co-organizers Mark Kieran and Jeffrey Greenfield. Dr. Kieran is a pediatric neuro-oncologist and researcher specializing in molecular biology of childhood cancer at Boston Children’s Hospital / Dana Farber Cancer Institute (DFCI) and responsible for the latest research in the field, and Dr. Greenfield is an oncological neurosurgeon and researcher at the Weill Cornell Medical Center in New York, as well as director of the Children’s Brain Tumor Project of this center and a specialist in pediatric tumors.

The congress was able to lay the foundations to fight against this rare type of brain tumor. During the congress the first steps were taken to investigate the disease at an international level and provide ideas to finance this process.

Andrés Morales explained that in this first international congress important agreements were closed. The first, the elaboration of a consensus manuscript on the recommendations reached during the congress on the diagnosis and treatment of gliomatosis cerebri. “The intention of this scientific document, which will be published in a high-impact medical journal, is to increase the visibility of this rare disease among health workers, and shorten diagnostic delays,” Morales says.

As this researcher at the Sant Joan de Deu Hospital in Barcelona explains, “in this disease, epidemiological data is very inaccurate. The main problem is that gliomatosis cerebri is highly underdiagnosed, so the actual number of cases is unknown. On the other hand, being late diagnosed, the case often does not reach the hands of an oncologist, so the case is not reflected in the national registry. ”

In addition, work will be carried out on a single international registry dedicated exclusively to this disease, “with the objective of having access to the maximum number of cases with gliomatosis cerebri, regardless of the part of the world where it comes from. The information corresponding to the symptoms of the disease will be collected, the images and the sample of tumor tissue will be reviewed in a centralized manner. This way, the diagnosis given initially will be confirmed and an attempt will be made to collect as much biological material as possible, to carry out the molecular studies necessary to better understand this disease. This registry will be responsible for doing this retrospectively and prospectively. ”

Another agreement reached is the centralization of the samples obtained in two regional research centers: for North America and Canada, in New York and for Europe, in London. “We hope that over time, we can cover new countries / continents, to have access to more samples,” Morales explains.

Based on the information obtained from the tumor tissue samples, a clinical trial based on the molecular characterization of each tumor will be developed. “When some of these projects have taken shape, the second international congress will be held, to agree on the steps to follow,” adds Morales.

Conclusions published in Pediatr Blood Cancer (2016)

PARALLEL CONGRESS OF ASSOCIATIONS AND FAMILIES

The families and associations met with the attendees at the beginning and at the end of the congress, and in turn held a parallel congress to share their experiences, study new forms of collaboration and seek funds for GC research. At the beginning of the congress they appeared before the attendees and at the end they entered again to listen to their conclusions. An emotional networking dinner was also held between the researchers and the eight families that participated, from the United States, Italy, France, England and Spain

II Gliomatosis Cerebri Congress (Washington, 2017)

Coordinated by Dr. Katherine Warren at the NIH. Several researchers and specialists from North America and Europe were present to share preliminary data on some of the projects that began after the first congress organized in Paris in 2015.

There was a general agreement that Gliomatosis Cerebri is more than one entity, it is a “superinvasive” development and a highly aggressive phenotype of high-grade gliomas.

Recently, molecular GC data published on adult and pediatric cases have shown that they share molecular markers with other high-grade gliomas. Other preliminary data presented by the SIOPE group at this meeting supported this hypothesis.

After that, as a conclusion, it was said that the approach might not have to focus so much on these molecular characteristics, but on the mechanisms that make these tumors so migratory and aggressive. Also to be considered, what kind of interaction exists between the tumor cells and the tumor microenvironment, that is what allows neoplastic cells to travel to other parts of the brain, very particular to this tumor. In addition, preclinical and clinical treatment was prioritized, projects that should provide answers in the following years.

Regarding the projects, the laboratories would continue working on the establishment of GC cell lines and animal models.

Clinically, since GC is no different in histopathology, patients with this diagnosis would begin to benefit from clinical trials including immunotherapy.

There was a debate about a potential clinical trial specific to GC within some North American institutions.

Establishing a GC registry remains an important objective on both sides of the Atlantic, in order to better understand its incidence and collect tumor samples for the aforementioned preclinical projects. It was proposed to use the international model and structure of the DIPG registry, in order to optimize resources and reduce workload and costs.

According to the researchers, it was inspiring to see the families affected by the GC working together with the specialists during this second meeting.

Thanks to the efforts of numerous researchers, it has been confirmed that at the genetic / molecular level the GC is not different from other high-grade gliomas (HHG) at the “histological” level but that they do not have that infiltrative component. In Europe, 50 samples have already been sequenced, a very important number that has yielded a lot of information.

It was decided to continue deepening the molecular study, sequencing tissues, and new ways of research were opened. These that can give some clues to explain the rapid proliferation and dispersion of the tumor, the so-called microenvironment: proteins, enzymes, immune system, vascular system…

The action of one of the factors or their interaction among them, may be the cause. This is a great challenge for science, and several incipient studies in this line were already presented, such as those of Dr. Michelle Monje from Stanford Medicine in California.

Another course of investigation, presented by Jack Shern of the NCI, is to sequence each cell separately from a GC biopsy, which will provide information on all the cells that comprise it, both tumor cells and non-cancer microenvironment cells, which contribute to perpetuating the malignant phenotype of these tumors. This technology would give very relevant information to understand the GC.

The European working group, coordinated by Andrés Morales (Sant Joan de Déu Hospital in Barcelona), had worked on Shern’s course of investigation and during the congress the different tasks were defined, dealing with each of these aspects different centers in several countries (each center will deal with one of the 4 aspects), and then make a complete review of each case. All of it centralized in Bonn.

It was also considered that before moving on to the clinical trial phase, there must be more learning about GC. Molecular sequencing, in addition to expanding the knowledge of the disease, will serve to find therapeutic targets.

Regarding diagnosis and treatment, the response of the specialists was the same when asked by one of the associations. Undoubtedly, biopsy, sequence the tissue to find all the mutations the child has and look for a trial aimed at some of those mutations, which can help to slow down the disease and improve the quality of life, usually combined with radiation.

Conclusiones publicadas en J Neurooncol (2018)