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IBTA e-News

The monthly bulletin for our
international brain tumour community

September 2016

Leading news

The 10th International Brain Tumour Awareness Week: 22 – 29 October 2016

The 10th International Brain Tumour Awareness Week is fast approaching. It will be held from Saturday, 22nd October to Saturday, 29th October inclusive. Wherever you live, we'd be delighted if you would organise or get involved in an activity that will contribute to increased awareness about brain tumours.

It could be an awareness-raising picnic, an information seminar, a radio or TV interview, a scientific conference, or the distribution of a statement to local media which draws attention to the particular challenges of a brain tumour and the need for a special response and an increased research and support effort. For further details of the International Brain Tumour Awareness Week, including a list of FAQs, please click here
The International Brain Tumour Awareness Week is also a great time to have an awareness raising walk and symbolically “donate” your walked mileage to the IBTA’s 2016 Walk Around the World for Brain Tumours.  For more information on the “World Walk” please click here.

Please register/report your Awareness Week activity or World Walk by completing this form.

Treatment news 

Medulloblastoma study: Deferred post-operative radiotherapy linked to worse survival in children aged three to eight  

Amidst concerns over the long-term harmful effects of radiation, it is becoming increasingly common to defer post-operative radiotherapy in children under  three years of age with medulloblastoma, write the authors of a study published in JAMA Oncology. Analysing data of medulloblastoma patients aged three to eight years diagnosed between 2004 and 2012 (from the United States National Cancer Data Base), the study found that patients whose radiotherapy was deferred by 90 days or more had a lower survival at five years (82.0% vs 63.4%). Read more

Update for Professor Ben Williams’ book “Surviving Terminal Cancer” now available online

21-year survivor of a glioblastoma, Professor Ben Williams has published an update to his book: “Surviving Terminal Cancer”. Originally published in 2002, he offers free updates that include the latest research and treatment developments. This year the update has again been prepared with Stephen Western, medical editor of  the Musella Foundation’s, and new content has been highlighted in red. Download or read online here.

Anticoagulation therapy increases intracranial bleed risk in glioma, but not in brain metastases, study finds

Published in the Journal of Thrombosis and Haemostasis, a meta-analysis of nine previously published studies has found that anticoagulation therapy for the prevention of venous thromboembolism (such as low-molecular weight heparin) is linked to a 3.8-fold increase in intracranial haemorrhage in glioma patients. Conversely, anticoagulation therapy did not increase risk of intracranial haemorrhage in brain metastasis patients. The authors note that further research is needed and that “in the interim, we believe the existing data support the use of therapeutic anticoagulation in the absence of contraindications, in accordance with current recommendations.” Read more.

Research news

Brain tumours overtake leukaemia as leading cause of childhood cancer death in USA

Childhood cancer deaths in children have been falling in the United States from 1999 to 2014, but in that time brain tumours have replaced leukaemia as the most common cause of cancer-related death in children, according to a report published by the United States National Center for Health Statistics. Brain tumours now account for 29.9% of childhood cancer deaths (up from 23.7%), whereas leukemia accounts for 24.9% (down from 29.7%). Read more.

Trial results show Vinblastine effective as first-line chemotherapy in childhood low grade glioma

Results from a phase II trial of the chemotherapy drug vinblastine in progressive low grade glioma patients aged under 18 has shown it to be as effective as other current therapies, and was reported to not affect quality of life. Published in the Journal of Clinical Oncology, the study reports that 54 patients who had not previously received chemotherapy were given the agent weekly over 70 weeks, and the five-year overall survival rate was 94.4%. Read more.

International Agency for Research on  Cancer (IARC) concludes that obesity increases risk of meningioma and seven other cancer types

An evaluation of over 1,000 studies by the International Agency for Research on Cancer (IARC), part of the World Health Organisation (WHO), has concluded excess body fat increases the risk of meningioma, in addition to increasing the risk of liver, gallbladder, pancreatic, ovarian, thyroid and gastric cancers, and multiple myeloma. These findings build on a previous IARC evaluation, published in 2002, that concluded obesity increases the risk of cancer of the colon and rectum, oesophagus, kidney, breast in postmenopausal women, and endometrium of the uterus. Read more (World Health Organisation press release).

Errors in a gene that is essential for life drives the growth of meningioma, according to study

Mutations in the gene that encodes RNA polymerase II – a protein previously thought to be indispensable for life – have been found in meningioma tumours, according to research published in Nature Genetics.  Genetic analysis of 775 meningioma tumours revealed these mutations, and mutations in four other genes, which the researchers say could open the possibility for future personalised, precision therapy in some meningioma patients. Read more.

Machine learning algorithm said to be better than physicians at differentiating brain tumours from necrosis on MRI

A computer algorithm has been developed that, according to research, was more accurate than two independent neuroradiologists at differentiating between radiation necrosis (tissue death) and brain tumour recurrence on brain MRI images. Published in the American Journal of Radiology, of fifteen MRI scans, the computer program correctly diagnosed twelve, while the two physicians correctly diagnosed seven and eight, suggesting such software could reduce the need for tumour biopsy. Read more.

Computer software unpicks the genetic and molecular drivers of glioblastoma growth – study in EBioMedicine

Despite much progress being made in identifying genetic and cellular changes that occur in glioblastoma tumours, questions remain over which are the ‘driving’ factors behind tumour development and growth. In a study published in EBioMedicine, researchers developed computer software to analyse known genetic and molecular changes that occur in the mesenchymal glioblastoma subtype, revealing that alterations in the Annexin A2 gene are a key driver of tumour growth, a finding that was confirmed in cell-based experiments. Read more.

Genetic analysis reveals ‘glioblastoma’ cells widely used in brain tumour research have an unknown origin

The U87MG cell line is commonly used to simulate glioma tumour growth in lab-based experiments and has been used in around 2,000 scientific papers. A genetic analysis of the cell line, published in Science Translational Medicine, has uncovered that the cells do not come from the original glioblastoma tumour from which they were thought to originate. The U87MG cell line was established in 1966 from a glioblastoma tumour of a 44-year-old woman but, prompted by observed unusual growth patterns, was discovered to have come from a different, unknown, tumour. Read more. (Interview with one of the study’s authors available here.)

Chemotherapy drug sensitises glioma cells to immune system attack, research suggests

Results from lab-based research published in PLOS ONE have shown that decitabine – a hypomethylating agent used in the treatment of acute myeloid leukaemia – enhances immune cells’ ability to target and kill glioma cells, preferentially targeting glioma-initiating cells (GICs), which are often resistant to conventional therapies. The authors suggest treatments that combine chemotherapy drugs with immunotherapies should be explored further. Read more (full research paper).

Study identifies alterations in the immune system of glioblastoma patients

An analysis of the activity of the immune system in 51 glioblastoma patients (their immune phenotype) compared to healthy individuals has shown significant differences. Changes included reduced levels of specific surface proteins on immune cells (CD3 and TCRα/β), elevated levels of the cytokine IL-10 and the iron storage protein ferritin, and reduced levels of NK (Natural Killer) immune cells in some patients. These findings, published in the Journal of Hematology and Oncology, may help inform immunotherapies, the researchers concluded. Read more (full research paper).

Study shows mechanism of how glioblastoma tumours manipulate brain immune cells to help them grow

Glioblastoma cells exploit and use microglia (the resident immune cells of the brain) to aid their growth and invasion. A study published in Nature Immunology has found that glioblastoma cells inhibit the enzyme caspase-3 in microglia to trigger them to stimulate tumour cell growth instead of attacking them. Read more.

Whole brain radiotherapy has no benefit for non-small cell lung cancer patients with brain metastases, study shows

According to results from the phase III QUARTZ trial, published in The Lancet, non-small cell lung cancer patients who have brain metastases could be spared whole brain radiotherapy because it has little or no effect on overall survival. 538 patients were randomly assigned to receive whole brain radiotherapy or not, and there was no evidence of a difference in overall survival, overall quality of life, or dexamethasone use between the two groups over the study’s five-year period. Read more.

Company news

Long-term analysis of Novocure’s Optune shows survival benefit in newly diagnosed glioblastoma

Following an interim analysis of trial data published in December 2015, Novocure has now announced that the long-term data from the trial of newly diagnosed glioblastoma patients using Optune (a portable Tumor Treating Fields device) in combination with temozolomide shows improved survival rates at four years, with extended progression-free survival. Results from the EF-14 trial, which involved 695 patients, are to be presented at the 21st Annual Scientific Meeting of the Society for Neuro-Oncology (SNO) in Scottsdale, Arizona, on 18 November, 2016. Read more (company press release).

Monteris Medical’s NeuroBlate System is granted Investigational Device Exemption (IDE) by US FDA for newly diagnosed glioblastoma

The United States Food and Drug Administration (FDA) has granted Investigational Device Exemption (IDE) for the NeuroBlate System to be used in newly diagnosed glioblastoma trials. Developed by Monteris Medical, and previously granted IDE for recurrent glioblastoma, the NeuroBlate System is a minimally invasive MRI-guided surgical treatment that destroys tumour tissue with laser energy via a robotically controlled probe. Monteris Medical has announced plans to initiate a clinical trial that will take place in five US states. The trial of the technology has received media attention. Read more (company press release).

Phase II trial of Kadmon’s tesevatinib in recurrent glioblastoma starts

Kadmon Holdings has announced that the first recurrent glioblastoma patient on a phase II clinical trial of tesevatinib, an epidermal growth factor receptor (EGFR) inhibitor, has received treatment. The drug targets EGFR, a cell surface protein whose gene is amplified in 50% of glioblastoma patients, and animal studies have shown it can readily pass the blood-brain-barrier, a feature that many other EGFR inhibitors lack. Read more (company press release).

IBTA news

The IBTA exhibits at ASNO-COGNO 2016 Scientific Meeting

On 11-14 September 2016, the 13th Asian Society for Neuro-Oncology (ASNO) Annual Meeting and the 9th Co-operative Trials Group for Neuro-Oncology (COGNO) Annual Scientific Meeting were held in Sydney, Australia. With over 250 delegates from 20 countries attending, this was the largest neuro-oncology meeting ever held in Australia. The IBTA had the privilege of attending and exhibiting at the event and you can read our selected notes of the scientific meeting on our website here. We are particularly grateful to Brain Tumour Alliance Australia (BTAA), who generously let us share their exhibition booth at the conference.

Now online: When a parent has a brain tumour...

The IBTA website is regularly updated with new articles and content. We recently posted "When a parent has a malignant brain tumor: an innovative weekend camp for families" from the 2016/17 edition of Brain Tumour magazine on the IBTA website. To read more about the Milton Marks Neuro-Oncology Family Camp - an annual weekend camp retreat for families with children, where one parent has a malignant brain tumour - click here.

Brain Tumour community news

Project Impact: The National Brain Tumour Society launches a campaign to defeat childhood brain tumours

The National Brain Tumor Society (US) has launched a campaign called Project Impact to fund research for paediatric high grade glioma (including diffuse intrinsic pontine gliomas, DIPG), with the aim of developing the first-ever standard of care that will extend and improve the lives of these children. The project aims to initially raise at least US$2.5 million over five years to resource the launch of scientific projects within the Defeat Pediatric Brain Tumors Research Collaborative, with an ongoing target of ultimately investing more than $5 million. Read more.

CERN Foundation publishes second edition of ‘Ependymoma Guide’

The Collaborative Ependymoma Research Network (CERN) Foundation has released the second edition of ‘Ependymoma: a Guide for Patients, Caregivers and Advocates’, which is a full-colour 44-page document that gives facts about ependymoma, its diagnosis, treatment, and a directory of relevant organisations and resources. Paper copies can be ordered for free, or the guide can be read online and downloaded here.

Three non-profits collaborate to launch international immunotherapy trial for children with brain tumours

A Kids’ Brain Tumor Cure Foundation, Solving Kids’ Cancer and the Ty Louis Campbell Foundation have announced that they will be funding a total of US$185,000 for a clinical (phase I) trial of a combination of the checkpoint inhibitors nivolumab (an anti-PD1 antibody) and ipilimumab (an antibody targeting CTLA-4) in children with brain tumours. Amy Weinstein, Executive Director at A Kids’ Brain Tumor Cure Foundation said: “One of the most frustrating roadblocks we have faced in the childhood cancer community is the lack of collaboration and information sharing … [This clinical trial] is a win-win that breaks down these barriers and puts children first.” Read more.

And in other news...

Final scope for NICE brain tumour guidelines decided

The National Institute for Health and Care Excellence (NICE), the body that sets clinical practice standards and recommendations for the UK National Health Service (NHS), has published a final scope document that outlines the extent of forthcoming NICE guidance for primary brain tumours and brain metastases in adults. Due to be published in July 2018, the scope was decided with input from a range of stakeholders, including the IBTA. All documents published to date can be viewed or downloaded here.

Tragically Hip lead singer, Gord Downie, bids Canada farewell

The lead singer of the Canadian band Tragically Hip, Gord Downie - who was diagnosed with a glioblastoma in May 2016 - concluded an emotional farewell tour in Ontario, Canada, on 20 August. Canadian Prime Minister Justin Trudeau, who attended the performance,  said on Twitter: “On behalf of Canadians, I thank Gord Downie and the Hip for their decades of service to Canadian music. Forever in our hearts and playlists”. Read more.

Conference and event news

Patient advocate scholarships for ECCO 2017 available
Applications are now open for scholarships to help patient advocates attend the European Cancer Conference (ECCO) 2017 (details below). Worth up to a maximum of 875 Euros, to cover travel and accommodation costs, the deadline for applications is 15 November 2016.
For details and to apply online, click here.

Upcoming conferences and events

Brain Tumor Survivor and Caregiver Symposium
1 October 2016
Phoenix, Arizona, USA

European Society for Medical Oncology (ESMO) 2016 Congress
7-11 October 2016
Copenhagen, Denmark
The new-format ESMO Patient Advocacy Track will also be taking place from 7-10 October and will address the specific needs of the advocacy community in oncology. Find out more about this dynamic programme here.

12th Congress of the European Association of Neuro-Oncology (EANO)
12-16 October 2016
Mannheim/Heidelberg, Germany

Brain Tumour Foundation of Canada National Conference: "Join the Movement to End Brain Tumours"
21-22 October 2016
Toronto, Ontario, Canada
Live streaming: Plenary sessions on 21 October will be live-streamed to various locations across and outside Canada for those unable to attend. For more details and to register your interest click here

Selected 2017 events: save the date!

The Royal Marsden Paediatric Neuro-Oncology Study Day
13 February 2017
London, UK

The 5th Quadrennial Meeting of the World Federation of Neuro-Oncology Societies (WFNOS)
4-7 May 2017
Zurich, Switzerland

Keep up to date with future scientific conferences and events on the IBTA website conferences page here. If you are aware of a brain tumour-relevant conference, including any patient conferences, that we have not yet listed on the IBTA website then please let us know.

IBTA Website
IBTA Website


Who we are

The International Brain Tumour Alliance was established in 2005. It is a network of support, advocacy and information groups representing brain tumour patients and carers in different countries and also includes researchers, scientists, clinicians and allied health professionals who work in the field of brain tumours.
For more information, please visit  


Tell us what you think!

We love to hear from you if you have any news that you would like to share with the IBTA community. Just send us an email:
We will do our best to relay as much information as possible to our subscribers via this monthly newsletter and our website. The selection of e-News entries is at the sole discretion of the editors.
Copyright © 2016 The International Brain Tumour Alliance, All rights reserved.


The International Brain Tumour Alliance (IBTA) makes every effort to be accurate regarding the information contained in this e-News (or in any documents, reports, notes or other material produced for and on behalf of the IBTA to which we provide a link in this e-News).  However, the IBTA accepts no liability for any inaccuracies or omissions herein nor can it accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as information on websites to which we link. The information contained in this e-News is for educational purposes only and should in no way be taken as a substitute for medical care nor is the information on the IBTA website meant to constitute medical advice or professional services. For medical care and advice, please contact your doctor. Inclusion of clinical trial news does not imply the IBTA’s particular endorsement or not of any trial.

Other websites linked from the IBTA e-News are not under the control of the IBTA. Therefore we take no responsibility for their content. The IBTA has provided these links as a convenience to you and can in no way verify the information, quality, safety or suitability of linked websites.

Any company sponsorship of the IBTA's projects does not imply the IBTA's endorsement of any particular form or forms of therapy, treatment regimen or behaviour. (For further details of our sponsors, please see our Sponsorship Policy).

The views and opinions in the materials included in this e-News may not necessarily be those of the International Brain Tumour Alliance.

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