Gliomatosis Cerebri (GC) is an extremely rare brain cancer for which there are no treatments and no clinical trials at the moment. It is a very aggressive strain of brain cancer that typically affects children, teenagers and young adults. It does not manifest itself as a lump, but instead is like a spider's web of cancer threads that spread deep into the brain, making it impossible to remove surgically, or to treat with radiation.
The tumour originates in the glia, the cells of the connective tissue of the brain, from where it spreads very rapidly to other parts of the brain.
The prognosis for the disease is poor and has remained the same since the past few decades, as the disease is fatal even now.
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The 2nd International Conference on Gliomatosis Cerebri was held in Washington D.C on June 22nd and 23rd, 2017. It was held at the National Institutes of Health, Bethesda and was attended by leading scientists, doctors and clinicians from many of the top institutions in the US and Europe. The number of Foundations attending this year also doubled from the last event two years ago.
The focus of the discussion amongst the professionals was to come to a common understanding on the nature of Gliomatosis Cerebri and to define whether it was a disease or a manifestation of certain brain tumors. it was encouraging to note that the tissue samples available had increased substantially over the last two years. There was also agreement on sharing the data between the scientists across geographies to facilitate more efficient research.
The Foundations deliberated on the governance structure to get visibility on the various research activities in institutions that were being funded by them. It was also agreed that GC Global website will be developed into a single point of reference for Foundations to connect with each other, in addition to their individual websites. The main purpose of GC Global is to disseminate information about the disease and keep updating the progress made on the research.
Overall a lot of headway was made at the conference and in conclusion it was agreed to focus on three important tasks, before the next conference, two years later. These are - Tissues and Targets, Immunology and Clinical Translation.
Dr. Chris Jones (extreme left) and his research team
The 1st International Conference on Gliomatosis Cerebri was held in Paris on March 26th & 27th, 2015. It was a groundbreaking event, bringing together over 35 of the top physicians and scientists from North America and Europe, for the first time to focus on Gliomatosis Cerebri.
The families and foundations that attended, spent focused time together sharing information on our loved ones, information on our foundations, and shared many fundraising ideas. We talked about how we could make additional connections with others touched by GC and how to work together to create a structure to financially support the work coming out of this conference.
With the commitment of the physicians and scientists in attendance, and through the support of all of you, we will be able to make a difference for this disease, which has impacted so many loved ones in different parts of the world.
A decision was made by the MDs & the scientists attending, to consolidate tissue analysis at two sites – Weill Cornell in NYC and the Institute of Cancer Research (ICR) in London. All samples available will be forwarded to these two sites for sequencing. This analysis will identify mutations present in the tissue samples, with the goal of identifying common mutations across the samples. The identification of common mutations would lead to further research and provide information which is not available today, which could be used to test new treatments for GC. The goal is to analyze a minimum of 100 tissue samples over the next one to two years.
A further decision was made to support one International GC Registry, to use the GC Registry which is already online through Weill Cornell. All patients and physicians should be directed to the GC Registry. The GC Registry will be utilized as the central source for clinical annotation, central radiologic and histologic review, Tissue banking ( DNA, RNA, etc).
For more details on the GC registry: