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IBTA e-News

The monthly bulletin for our
international brain tumour community

October 2016

Leading news

Marking International Brain Tumour Awareness Week 2016        

This month has seen the tenth International Brain Tumour Awareness Week (22nd-29th October), one of two main annual awareness-raising campaigns established by the IBTA.
A wide  range of creative activities has engaged a great many people: the Cyprus Brain Tumor Association (CBTA) held a major conference in their country and the Brain Tumour Foundation of Canada held their inaugural national conference in Toronto at the start of the Week, live streaming the event so that it was accessible to as many people as possible. In India, the Tata Memorial Hospital and the Brain Tumour Foundation of India (BTF) held their Annual Art Festival, where children with brain tumours displayed their artistic talents to an audience of over 300 families. Supporters of the National Brain Tumor Society in the United States commemorated the Week by wearing orange and gray clothing and sharing their photos online under the hashtag #OrangeandGray; supporters in Western Australia held a walk along the banks of Perth’s beautiful Swan River, with the mileage to be contributed to the IBTA’s Walk Around the World for Brain Tumours campaign. VUMC Hospital in The Netherlands featured the Week in their newsletter to doctors and specialists, promoting it in conjunction with a book which includes the case of a brain tumour patient.

These are just a few examples and we would love to hear more about any activities you may have been involved in – please reply to this email or email: To register a walk, or report on a completed walk for the Walk Around the World for Brain Tumours campaign, please click here.

“Cancer Moonshot” reports published

The White House (USA) has released the final report of the Cancer Moonshot Task Force. Released on the same day, a report by the “Blue Ribbon Panel” gives a blueprint for key initiatives that will make major contributions towards the initiative’s goal. Several members of the brain tumour community - David Arons (CEO of the National Brain Tumor Society), Professor Mitch Berger (Chair, Department of Neurological Surgery, University of California, San Francisco) and Professor of Neuro-Oncology W K Alfred Yung (Chair of Clinical Cancer Care, University of Texas MD Anderson Cancer Center) - serve on the "Blue Ribbon Panel". Read more.

SISAQOL will provide recommendations for standardising the analysis of health-related quality of life and other patient reported outcomes (PROs) data 

An editorial in The Lancet Oncology describes the launch of a new initiative that aims to provide recommendations for standardising how quality of life and PROs are analysed in cancer clinical trials. Called SISAQOL (Setting International Standards in Analysing Patient-Reported Outcomes and Quality of Life Endpoints Data) and directed by the European Organisation for Research and Treatment of Cancer (EORTC), the consortium includes a wide international range of stakeholders, including the IBTA Chair Kathy Oliver. Read more (subscription required for full article).

Treatment news 

Low grade glioma: no difference in quality of life between temozolomide and radiotherapy, clinical trial concludes

Published in The Lancet Oncology, findings from a randomised phase 3 trial involving 477 patients from 19 countries have shown that there is no difference in health-related quality of life (HRQOL) between temozolomide or radiotherapy treatment in patients with high risk low-grade glioma. Given that there is no difference in progression-free survival between these two individual treatments, the authors say that these findings do not justify the convention of choosing temozolomide over radiotherapy in this patient group. Read more.

Radiation dose linked to poorer vocabulary development in childhood brain tumour, says prospective study

Treating childhood brain tumours with radiation therapy is known to be associated with cognitive impairments in later life, but a study published in the journal Cancer has found that radiation dose is also linked to worsened vocabulary development. Ten paediatric brain tumour patients were followed for 27 months after radiation therapy and compared with 14 age-matched healthy children. Right frontal and right temporal lobe volumes were reduced and vocabulary test scores poorer in the patient group. Read more.

Clinical trial results suggest vinblastine as first-line therapy in childhood low grade glioma

A phase II trial of the chemotherapy drug vinblastine in 54 paediatric patients with progressive or inoperable low-grade glioma has found that overall survival and progression-free survival were equivalent to existing first-line treatments (94.4% and 53.2% respectively at five years). Toxicity was low and patients maintained quality of life. The authors suggest the drug could be a low-cost treatment in middle- or low-income countries where financial restraints and treatment-related toxicities are major challenges. Read more.

Low-risk meningioma patients who received surgery followed by observation modestly exceeded outcome expectations at three years, trial data shows

Announced at the American Society for Radiation Oncology (ASTRO) Annual Meeting in Boston, Massachusetts, USA on 27 September, a summary of initial results from an ongoing Phase II trial investigating the role of observation and radiotherapy in meningioma patients (NROG/RTOG-0539) has shown that low-risk meningioma patients treated with surgery (gross total resection) followed by observation have better-than-expected outcomes at three years (but not at five years). The results could help inform future practice in this patient group, although “further follow-up and analyses are required”, the authors write. Read more (abstract available here).

Brain metastases trial: Better quality of life and similar life expectancy with radiosurgery, compared to whole brain radiotherapy

Results from a randomised trial comparing targeted radiation therapy (stereotactic radiosurgery, SRS) and whole brain radiotherapy (WBRT) in patients with brain metastases has found that quality of life and cognitive functioning is better with SRS, but overall survival is equivalent. The findings from the multi-centre study that included 194 patients were reported at the American Society for Radiation Oncology (ASTRO) Annual Meeting in Boston, Massachusetts, USA on 25 September. Read more.

Studies show: family caregivers’ mastery predicts survival in glioblastoma; but carer time burden is ‘substantial’

A study published in Cancer has found a link between family caregivers’ mastery and glioblastoma survival. Results from 88 patient-caregivers showed a 16.1% risk reduction in patient death for each unit increase in mastery. Read more. A separate ongoing study, conducted at the University of Rochester Medical Center, NY, USA, has found that caregiver time burden in glioblastoma is substantial, even at the time of diagnosis. The authors say that measuring caregiver time burden may identify early risk for distress and help develop interventions to improve caregiver quality of life Read more.

Study finds that couples-based yoga may have a role in brain tumour care

A small trial assessing the feasibility of couples-based yoga therapy for high grade glioma patients undergoing radiation therapy and their carers has shown improvements in quality of life for both participants. Similar therapies have been shown beneficial in breast cancer, and the findings presented at the Palliative Care in Oncology Symposium 2016, San Francisco, USA, showed improvements in side effects, including psychological distress, sleep and fatigue after 12 sessions. Read more.

Updates on recurrent glioblastoma treatment

An abridged version of an article published earlier this year in Critical Reviews in Oncology/Hematology, “Therapeutic options in recurrent glioblastoma –an update”, has been published in Cancer World. The article considers the latest research for diagnosis and possible treatment strategies for glioblastoma at recurrence, and includes a summary of recommendations from the authors. Read more.

Research news

Study finds that human glioblastoma cancer stem cells grown in the lab do not mimic actual tumour tissue

Research published in Oncotarget has examined how glioblastoma cancer stem cells (CSCs) behave when extracted from tumour tissue and grown in the lab. CSCs are the cells within a tumour that are thought to drive growth and contribute to a tumour becoming resistant to a treatment. The findings showed that over time, the lab-grown CSCs evolved new characteristics that are not present in the original tumour, suggesting that although CSCs have a useful role in research, they do not truly mimic actual glioblastoma behaviour. Read more (full article).

Mouse study shows that glioblastoma tumours are ‘remarkably dependent’ on a supply of cholesterol, revealing potential drug treatment

A study published in Cancer Cell has found that glioblastoma cells rely on a supply of cholesterol to survive and grow. In experiments on mice, a candidate drug called LXR-623 that disrupts the cholesterol import caused cell death and shrinkage in glioblastoma tumours. The drug passed the blood-brain-barrier and had minimal effects on other cells and tissues. Read more.

New technology to rapidly test brain tumour treatments

A new technique for testing potential drugs in brain tumour cells has been developed by a team at Massachusetts Institute of Technology (MIT) and Dana-Farber Cancer Institute, Massachusetts, USA, with colleagues in Japan and France. Reported in Nature Biotechnology, the researchers successfully trialled a device called a suspended microchannel resonator (SMR) – which tracks the mass of individual cells over short periods of time – to test glioblastoma cells against drugs called MDM2 inhibitors. The new technique could rapidly assess new potential drugs in a system that is analogous to antibiotic testing of bacteria in Petri dishes. Read more.

Trial results indicate that dabrafenib has effect in childhood low grade glioma with BRAF V600 mutation

Results from a phase I/II trial of paediatric patients with BRAF V600 mutation-positive low-grade glioma have shown a response rate of 72% with dabrafenib, a drug that specifically targets cancers with this mutation. The BRAF V600 mutation is present in 15-20% of paediatric low-grade glioma tumours and is associated with poorer survival. Speaking at the European Society for Medical Oncology (ESMO) 2016 Congress, held October 7–11 in Copenhagen, Denmark, author Dr Mark Kieran said: “We want to make the response rate with dabrafenib even higher by combining it with a MEK inhibitor since that works in adults”. Read more.

Comprehensive genetic and molecular analysis of schwannoma tumours identifies possible drug targets

Researchers have comprehensively mapped the genomic landscape of schwannoma brain tumours, discovering several genetic and molecular changes that could help better understand and treat these rare tumours. Published in Nature Genetics, 125 tumour samples were analysed and new subsets of schwannoma were identified. Read more.

ADAM10 and ADAM17 enzymes identified in study as potential targets against glioblastoma stem cells

A study published in Molecular Microbiology has examined the role that the enzymes ADAM 10 and ADAM17 play in glioblastoma stem cells (GSCs) – the cells thought to drive tumour growth and develop resistance to treatments. The two closely-related enzymes are known to be highly present in glioblastoma cells, and this study suggests that therapies targeting them may make stem cells more susceptible to treatment. Read more.

Company news

First anaplastic astrocytoma patient enrolled on phase 3 trial of Orbus Therapeutics’ eflornithine

Orbus Therapeutics has announced that the first patient has been enrolled in a pivotal randomised phase 3 clinical trial, called STELLAR, to assess the effectiveness of eflornithine plus the existing chemotherapy agent lomustine, versus lomustine alone in anaplastic astrocytoma that has recurred after radiation therapy and temozolomide. Eflornithine inhibits ornithine decarboxylase, an enzyme that is upregulated in certain cancers. Read more (company press release).

Phase 3 trial of Novocure’s Optune in brain metastases begins

A pivotal randomised phase 3 trial of Tumor Treating Fields (TTFields) for brain metastases from non-small cell lung cancer (NSCLC) has enrolled its first patient, Novocure has announced. The METIS trial plans to enrol 270 patients with 1-10 brain metastases. Read more (company press release).

Phase 1 trial of Tocagen’s Toca 511 & Toca FC update

Results from a phase I trial of Tocagen’s Toca 511 & Toca FC immunotherapy treatment in recurrent high grade glioma have been presented at the 10th International Oncolytic Virus Meeting in Vancouver, Canada, on 5th October, showing an overall response rate of 21% and a median survival of 14.3 months in a cohort of 24 patients. The study authors note that all responding patients remain alive, and are clinically stable or improved at 21-42 months after study entry. Read more (company press release).

Brain tumour community news

Ten ‘key takeaways’ from the 2016 National Brain Tumor Society Scientific Summit

The National Brain Tumor Society (US) held its annual scientific summit on 26 September in Boston, Massachusetts, USA, with the theme: “Capitalizing on the Inflection Point in Cancer Research”. Focused on charting the next steps and the best paths toward greater progress and accelerated treatment development in brain tumours, a summary of ten key messages from the event have been compiled online here.

Report by UK charity Brain Tumour Research finds poor research funding and lack of awareness of brain tumours

The UK-based charity Brain Tumour Research has published their latest “National Research Funding Report 2016”, which continues to highlight that brain tumour research in the UK is “drastically underfunded”. It calls upon the UK Government to urgently address a range of substantial shortcomings. Read the report online here.

And in other news...

Tragically Hip fans raise over $1 million for brain tumour research

Donations toward brain tumour research following the Canadian band Tragically Hip’s final tour, which concluded on 20 August, have exceeded CA$1 million. The lead singer of the group, Gord Downie, announced that he had been diagnosed with a “terminal” brain tumour on 24 May 2016. Read more.

COGNO trial in Australia receives news coverage

An article in the Sydney Morning Herald looks at a study in unmethylated glioblastoma that is being conducted by the Co-Operative Trials Group for Neuro-Oncology (COGNO) and the National Health and Medical Research Council with support from the University of Sydney. The trial is largely funded by the Cure Brain Cancer Foundation. The piece features interviews with Steven Johnson, a glioblastoma patient, and the trial's principal investigator Dr Mustafa Khasraw. Read more.

Charting the progress and challenges in DIPG research

A Scientific American article explores the progress that  made, and the challenges that lay ahead in diffuse intrinsic pontine glioma (DIPG) research. Highlighting how survival rates in this devastating childhood brain tumour have improved little in the past 40 years, it considers a variety of perspectives, as well as the recently announced dabrafenib trial results (in research news above). Read more.

Conference and event news

IBTA exhibited at EANO 2016 – see you at SNO!
The IBTA was delighted to attend and exhibit at the 12th Congress of the European Association of Neuro-Oncology (EANO) held on 12-16 October 2016 at Mannheim, Germany, and we will be publishing photos and a short report of the meeting in the coming days (follow us on twitter and Facebook for announcements). We will also attend and exhibit at the 21st Annual Meeting of the Society for Neuro-Oncology (SNO 2016) on 17-20 November in Scottsdale, Arizona, USA. Please visit our stand to say ‘hello’!

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.

WFNOS 2017 abstract submission open
Abstract submissions are now being accepted for the 5th Quadrennial Meeting of the World Federation of Neuro-Oncology Societies (WFNOS), which will be held May 4-7, 2017, in Zurich, Switzerland. The meeting aims to provide an opportunity to share up-to-date advances in basic science, translational and clinical research in a multidisciplinary setting.
Deadline for applications is 1 December 2016. Submit abstracts online here.

Upcoming conferences and events

2nd CNS Anticancer Drug Discovery and Development Conference
16-17 November 2016
Scottsdale, Arizona, USA

21st Annual Meeting of the Society for Neuro-Oncology (SNO 2016)
17-20 November 2016
Scottsdale, Arizona, USA

Selected 2017 events: save the date!

European Cancer Conference (ECCO) 2017
27-30 January 2017
Amsterdam, The Netherlands

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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