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IBTA e-News

The monthly bulletin for our
international brain tumour community

November 2018

Leading news

Celebrating achievements of International Brain Tumour Awareness Week 2018

The IBTA would like to thank all those who took part in this year’s International Brain Tumour Awareness Week, which ran from 20th-27th October 2018. This year saw a diversity of awareness-raising activities, which included walks, talks and seminars. Thanks also to those who helped promote brain tumour advocacy via social media using the hashtag #IBTAWeek.
Please do send us details and/or photos of any activities, big or small, that you have taken part in this year by emailing

2018 Society for Neuro-Oncology Annual Meeting (SNO 2018)

The 2018 Society for Neuro-Oncology Annual Meeting (SNO) took place on 15th-18th November in New Orleans, Louisiana, USA. SNO is a major international scientific conference whose focus is central nervous system tumours in adults and children and is the largest scientific conference dedicated specifically to brain tumours. The IBTA was delighted to be exhibiting at and attending this important event and further information will be included in the next issue of the IBTA e-News. The abstracts for SNO 2018 can be viewed online here.

Major UK Parliamentary report reveals the very high ongoing costs of brain tumours

A UK Parliamentary committee established in 2005, called the All-Party Parliamentary Group on Brain Tumours (APPGBT), has published a wide-ranging report about the economic and social impacts of brain tumours borne by patients, families and wider society. The report details these financial costs, many of which are 'invisible', stating that the average household affected by a brain tumour will be financially worse off by £14,783 (19,000 USD) per year, versus £6,840 for all cancers.The economic costs of brain tumours among working age people are ranked third highest among the common cancers, behind lung and breast cancer. The report gives recommendations to reduce financial burden to brain tumour patients and their families, as well as identifying ways to improve patient experience. The full report, which includes stories from those affected by brain tumours, can be downloaded here.

Further empowering ‘access advocacy' with Spanish and Portuguese translations of GOAL A3 resource

The GOAL (Global Oncology Advocacy Leaders) “A3” resource, “Advocacy Activities in Action: The Data Issue” has been published in Spanish and Portuguese editions.  This is a resource designed to help patient advocates work with healthcare systems to ensure that patients have access to a level of care, treatment and management that improves outcomes.  The A3 resources include practical experiences, guidance and tips from leaders in the cancer patient advocacy field and the IBTA contributed to this valuable resource with a section on their role in the EORTC’s SISAQOL initiative. The translation of these resources was inspired and encouraged by a Latin American advocacy coalition, Alianza Latina and the resources were created through its collaborative efforts with Brazilian patient advocacy teams and support from Bristol-Myers Squibb. Download the resource in: Spanish, Portuguese or English.

COGNO 2018 - Targeting Survival: Living well with brain cancer in the era of precision treatments

The Cooperative Trials Group for Neuro-Oncology (COGNO) is an Australian network of clinicians, researchers, consumer representatives and allied health professionals, whose mission is to achieve better health outcomes for patients and those affected by brain tumours through quality clinical trials research.  In October, COGNO held their 11th annual scientific meeting in Brisbane, Australia which focused on patient survivorship and precision treatments. A summary of some of the key topics discussed has been written by the Australian charity, Cure Brain Cancer Foundation, who were one of the event’s sponsors. Read more.

From the brain tumour community

Glioma survey - calling patients and brain tumour support charities and non-profits

Hanneke Zwinkels and Prof Dr. Martin Taphoorn, who are researchers from The Netherlands, would like to invite all glioma (grades 2, 3 and 4) patients, their caregivers, and former caregivers to take part in their research to determine a better description and characterisation of changed personality and behaviour in glioma patients. This research will ultimately lead to better identification of changed personality and behaviour, and improved patient care. The survey takes approximately 20-30 minutes to complete. Brain tumour support charities and non-profits, please spread the word in your communities about this important survey. We also ask healthcare professionals to kindly help reach as many glioma cases as possible by sharing the survey with your patients. To take part in the survey click here.

Cure Brain Cancer Foundation awards AUS$400,000 in research grants

Australian charity Cure Brain Cancer Foundation has announced the recipients of its 2018 Innovation Grants program. Two researcher groups have each been awarded AUS$200,000, taking the Foundation’s commitment to brain cancer research to more than $6.5 million over the last five years. Read more.

Research roundup

Study suggests digoxin as a potential treatment in paediatric medulloblastoma

Research published in Science Translational Medicine has identified the drug digoxin, which is already approved in heart failure treatment, as a possible treatment for subtypes of medulloblastoma. Experiments with digoxin in animals with medulloblastoma subtypes groups 3 and 4 showed an increase in survival, which was further extended upon combining with radiation, and, importantly, occurred at blood concentrations of the drug that might be feasible in patients. Read more.

Meta analysis identifies genetic markers linked to clinical outcome in IDH wild-type lower grade gliomas

Published in the European Journal of Neurology, an analysis of 11 studies (selected from a pool of 2,274 articles) has identified several genetic mutations associated with poorer prognosis in lower grade glioma. The clinical prognosis of lower-grade glioma that has a non-mutated isocitrate dehydrogenase gene (IDH wild-type) has been the subject of debate for some time. The results concluded that IDH wild-type lower grade glioma has varying clinical outcomes and not all tumours have a poor prognosis. The presence of TERT promoter mutation, H3F3A mutation and EGFR amplification showed negative prognostic impacts. Read more (abstract only).

Clinical study on surgical biopsy in childhood DIPG

Published in Neuro-Oncology, a multicentre clinical study has concluded that “Surgical biopsy of DIPGs [diffuse intrinsic pontine glioma] is technically feasible, associated with acceptable risks, and can provide biologic data that can inform treatment decisions.” The study further stated that: “Diagnosis of diffuse intrinsic pontine glioma (DIPG) has relied on imaging studies, since the appearance is pathognomonic, and surgical risk was felt to be high and unlikely to affect therapy. The DIPG Biology and Treatment Study (DIPG-BATS) reported here incorporated a surgical biopsy at presentation and stratified subjects to receive FDA-approved agents chosen on the basis of specific biologic targets.” Out of 50 patients in the trial who underwent the procedure, one patient experienced permanent neurological deficit and 92% of samples yielded sufficient tissue for analysis. Read more (full paper).

Study finds that paediatric brain tumour survivors experience significantly increased anxiety many years after successful treatment for relapse

Adolescent and young adult brain tumour survivors are at significantly increased risk for symptoms of anxiety, even years after successful treatment for relapse, according to a study published in the Journal of Adolescent and Young Adult Oncology. The paper’s authors state that the findings underscore the need for adolescent and young adult survivors, particularly those with a history of relapsed disease, to receive ongoing psychosocial assessment and intervention that is integrated with their oncology follow-up care. Read more.

Trial shows ‘liquid biopsy’ is safe and accurate for monitoring diffuse midline glioma in children; other tests in development

A 41-patient trial of a ‘liquid biopsy’ technique in children with diffuse midline glioma (DMG) has found it is a useful alternative to surgical biopsy for identifying H3K27M mutations, a key prognostic marker in the disease. The results, published in Clinical Cancer Research, showed that molecular analysis of blood and cerebrospinal samples (from spinal punctures) could be used to monitor disease progress and demonstrated accuracy comparable to surgical biopsy. Read more. A separate study published in the journal EMBO Molecular Medicine has detailed a ‘liquid biopsy’ technique that detected tumour DNA in 39 percent of 13 patients who had a glioma. Read more.

Report finds insufficient evidence to recommend "carte blanche" supratotal resection in all low grade glioma cases

According to a systematic review of literature published in Neuro-Oncology, there is currently insufficient evidence to universally recommend 'supratotal' tumour resection in all glioma cases, particularly in lower grade gliomas where neurological deficits can result in long-term disability. Supratotal resection is removal of a margin of tissue outside the MRI-defined abnormalities, and the paper concludes that although preliminary studies have linked the procedure with increased survival, future research is needed to validate these claims. Read more (payment/subscription needed for full paper).

Glioblastoma survival is improving despite increasing rates of diagnosis, study finds

A new study published in Neuro-Oncology that has examined the outcomes of glioblastoma patients in Finland found that survival in that country has improved between 2000 and 2013. Survival increased from 9.3 months in 2000-2006 to 11.7 months in 2007-2013 in those under 70 years old, and from 3.6 months to 4.5 months over the same time period in the over 70s. However, the increasing incidence of brain tumours, increasing age of patients, and poor survival in the elderly are alarming, the authors write, recommending that “future glioblastoma research should more and more focus on elderly". Read more.

Two antifungal drugs shown to slow glioblastoma growth in animal experiments

The drugs ketoconazole and posaconazole both inhibit an enzyme called HK2 in glioblastoma and appear to limit tumour growth, according to findings published in Clinical Cancer Research. HK2 is elevated in glioblastoma and a screen of 15 drugs predicted to target this enzyme identified these two antifungal drugs. Animal experiments subsequently showed that the drugs limit glioblastoma growth and extend survival, suggesting that they may have a role in glioblastoma therapy. Read more (full paper available).

Stem cells used to overcome glioblastoma resistance to immunotherapy in animal experiments

A report published in the journal Nature Communications has described a technique using stem cells for reversing brain tumour resistance to PD-1 checkpoint blockade, a type of immunotherapy. In a series of animal-based experiments, stem cells isolated from bone marrow were used to reprogram glioblastoma tumours to make them sensitive to immunotherapy. A recent phase 3 trial failed to demonstrate survival benefit with PD-1 monotherapy against recurrent glioblastoma, and this new approach may help make this treatment more effective. Read more.

Molecular testing reveals critical differences in childhood brain tumours that are diagnosed as CNS-PNET

Research using molecular testing has shown that paediatric brain tumours that would be classified as a ‘CNS-PNET’ based on their appearance could actually be any one of several other types of brain cancers. In a trial of 31 patients diagnosed in the traditional manner with CNS-PNET, molecular profiling revealed that 22 of the patients had brain tumours whose underlying biology was of a different type. Published in the Journal of Clinical Oncology, the study’s authors state these findings indicate that molecular profiling should become a standard part of initial diagnosis. Read more.

Avoiding the hippocampus during whole-brain radiotherapy prevents cognitive side effects

Whole-brain radiotherapy can be delivered more safely to patients with brain metastases by avoiding the hippocampus according to a randomized phase III NRG Oncology trial presented at the American Society for Radiation Oncology (ASTRO) Annual Meeting. Five hundred and eighteen patients in the trial were randomized to whole brain radiotherapy plus memantine with or without hippocampal avoidance, which revealed a 26 percent relative reduction in risk of cognitive toxicity following whole brain radiation therapy with hippocampal avoidance versus whole brain radiotherapy. Read more.

Study identifies new prognostic molecular markers in childhood medulloblastoma

Research published in The Lancet Oncology has identified prognostic markers in childhood medulloblastoma that indicate a more intensive, aggressive chemotherapy regimen is called for. This molecular analysis of 136 tumour samples from patients aged 4–21 years with medulloblastoma who had enrolled on the HIT-SIOP PNET 4 trial was able to define a whole chromosomal signature that can separate non-WNT/non-SHH medulloblastoma patients normally classified as standard-risk into favourable-risk and high-risk categories. Read more.

Evidence presented showing proton therapy for paediatric brain tumours has favourable cognitive outcomes

Proton therapy treatment for paediatric brain tumour patients is associated with better neurocognitive outcomes compared to x-ray radiation therapy, according to a study presented at the American Society for Radiation Oncology (ASTRO) Annual Meeting and the International Society of Pediatric Neuro-Oncology Annual Meeting. The retrospective study, which compared the outcomes of 125 paediatric brain tumour patients who received treatment, found that proton therapy was associated with higher performance in terms of full-scale IQ (10.6 points higher), processing speed (12.6 points higher) and parent-reported practical function (13.8 points higher) relative to x-ray radiation. Read more.

The unique symptom burden of glioma patients warrants tailored care, report concludes

A systematic review, published in the Journal of Neuro-Oncology, examining the symptoms experienced by glioma patients in different phases of disease and treatment has described the unique nature of glioma patients’ symptom burden. The report highlighted that symptoms were mostly due to the tumour itself, rather than the treatment, and the authors state that the findings emphasise the importance of tailored symptom care for glioma patients. They propose that care would be improved by use of a specific glioma Patient Reported Outcome Measure (PROM) tool that could be used daily. Read more (full paper).

Company News

Trial data analysis of ‘Tumor Treating Fields’ shows that higher delivered dose is associated with improved overall survival in newly diagnosed glioblastoma

Novocure has released results from an analysis of the EF-14 phase 3 pivotal trial in newly diagnosed glioblastoma, which indicate that higher doses of Tumor Treating Fields delivered via Optune to the tumour bed was associated with improved overall survival. Running simulations that calculate both electric field intensity and power loss density within the tumour bed of trial patients, this post-hoc analysis found that patients who used Optune more than 85 percent of the time (n=36) and received Tumor Treating Fields at power loss densities greater than or equal to 1.1 mW/cm3 had the greatest improvements in overall survival. Read more (company press release).

Kazia Therapeutics enters clinical collaboration with Dana-Farber Cancer Institute to investigate brain tumour therapy GDC-0084

The Australian biotech company Kazia Therapeutics has announced that it will collaborate with the Dana-Farber Cancer Institute to investigate the use of the company’s potential new brain tumour therapy, GDC-0084, in combination with the current standard of care, Herceptin (trastuzumab), in patients with HER2-positive breast cancer that has metastasised to the brain. The study is estimated to recruit between 22 and 49 patients, and will take up to three years to complete. Read more (company press release).

First patient enrolled on phase 2 trial of ROOT OF CANCER therapy in newly diagnosed glioblastoma

The first newly diagnosed glioblastoma patient has been enrolled on a phase 2 clinical trial of AVITA Biomedical’s ROOT OF CANCER treatment, the company has announced. The treatment is an immunotherapy that targets the tumour-initiating cells that are responsible for cancer proliferation and metastasis, and is also currently the subject of an active phase 2 clinical trial in ovarian cancer. Read more (company press release).

Mustang Bio gives update on clinical trials of CAR T cell therapy in brain tumours

Mustang Bio has announced that a phase 1 clinical trial evaluating the safety and effectiveness of a CAR T cell therapy in patients with HER2-positive breast cancer with brain metastases has been initiated. The company has also announced that the first patient has been dosed in a phase 1 clinical trial of HER2-specific CAR T cells in treating recurrent or refractory grade III-IV glioma. Read more (company press release).

A 3D-printed human brain organelle for studying neurological disease and developing new drugs is produced by Celprogen

Celprogen has announced that they have successfully finished printing ‘3D Brains’ from brain stem cells for drug development and for studying neurological disease, which includes glioblastoma. In work presented at the Society for Neuroscience’s annual ‘Neuroscience’ meeting in San Diego on November 3, 2018, the 3D printed human brain was used for studying "The role of Microglia activation and deactivation in neurological diseases." Read more (company press release).

Upcoming Scientific Conferences

3rd ESO-ESMO-RCE Preceptorships & Clinical Update on Rare Adult Solid Cancers
1-3 December 2018
Milan, Italy

UK Paediatric Brain Tumour Symposium
4th December 2018
Nottingham, UK

2nd Annual Miami Brain Symposium
7 December 2018
Miami, Florida, USA


SNO Pediatric Neuro-Oncology Basic and Translational Research Conference
3-4 May 2019
San Francisco, California, USA

5th EORTC Quality of Life and Cancer Clinical Trials Conference
16-17 May 2019
Brussels, Belgium

3rd Molecular Pathology Symposium 2019 | 2nd Asia Pacific Molecular Brain Tumour Course
18-19 May 2019
Gold Coast, Australia

Brain Tumor Meeting 2019
23-24 May 2019
Berlin, Germany

American Society of Clinical Oncology (ASCO) 2019 Annual Meeting
31 May-4 June 2019
Chicago, Illinois, USA


If you are organising or are aware of a forthcoming patient or brain tumour advocacy event or a scientific conference taking place in 2019 then please let us know by emailing so that we can also include it on our events page.

Keep up to date with future scientific conferences and events on the IBTA website conferences page here.

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 © 2018 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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