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IBTA e-News

The monthly bulletin for our
international brain tumour community

August 2018

Leading News

Outpouring of tributes paid to US Senator John McCain following his death

Members of the public and politicians from across the political spectrum have been expressing their sadness over the death of Republican Senator John McCain, aged 81, whose death from a malignant brain tumour was announced on 25 August. The six-term US senator from the state of Arizona and 2008 Republican presidential nominee was diagnosed with a glioblastoma in July 2017 and had recently decided to cease treatment.

All of us at the IBTA would like to extend our heartfelt condolences to Senator McCain’s family, friends and colleagues. With the loss of John McCain, we are once more starkly reminded of the undeniable and imperative to re-double efforts at conquering this disease. Read more.


TAVAREC trial results: “no evidence of improved survival” with bevacizumab (Avastin) in patients with first recurrence of grade II or III glioma, without 1p/19q co-deletion

Results of a randomised controlled phase 2 trial of bevacizumab and temozolomide in patients with first recurrence of WHO grade II and III glioma (without 1p/19q co-deletion) have been published in The Lancet Oncology. In this EORTC (European Organisation for Research and Treatment of Cancer) trial, 155 patients were enrolled and randomly assigned to receive either temozolomide monotherapy or temozolomide in combination with bevacizumab. The authors concluded that there was “no evidence of improved overall survival with bevacizumab and temozolomide combination treatment versus temozolomide monotherapy. The findings from this study provide no support for further phase 3 studies on the role of bevacizumab in this disease.” Read more (full study article requires payment).

National Cancer Patient Experience Survey in England gives snapshot of brain tumour care

The 2017 National Cancer Patient Experience Survey has been published in the UK, offering a snapshot of cancer patients’ experiences of their care in England. Results from over 118,000 respondents showed a “generally very positive” experience with some “significant improvements” since 2016. Brain and CNS tumour patients similarly reported improvements since the previous year but continued to have among the lowest patient experience scores of all cancer types, giving an average score of 8.52 out of 10 for their care, compared to a national average of 8.8. Full report online here (previous reports available here).

2018 edition of the IBTA’s ‘Brain Tumour’ magazine online

A reminder that the 2018 World Edition of the IBTA’s Brain Tumour magazine is available for viewing online via the IBTA website. Now in its ninth year, Brain Tumour is a unique publication that reaches deep into the international brain tumour community to deliver a wide selection of inspiring and thought-provoking articles. It is available in print form free of charge: 14,000 copies are sent to recipients in 111 countries and distributed at international neuro-oncology and cancer conferences. If you don’t yet receive a paper copy, you can sign up for this and future issues here.

Save the date! International Brain Tumour Awareness Week is 20 – 27th October 2018

The IBTA-initiated International Brain Tumour Awareness Week will run from 20-27th October 2018 and is an opportunity for anyone in the international brain tumour community to organise and/or take part in awareness-raising activities to highlight the various issues surrounding brain tumour treatment and care. Past years’ activities have ranged from informal tea parties and support meetings, to large scale conferences and fund-raising efforts. We hope that you will support this important week and please let us know about your planned activities. Contact the IBTA at if you have any questions about setting up an awareness-raising activity.

Brain tumour community news

New e-newsletter launched by NCI Neuro-Oncology Branch for NCI-CONNECT, a program for rare CNS cancers

The NCI (National Cancer Institute) Neuro-Oncology Branch at the National Institutes of Health (USA), a part of the US Department of Health and Human Services and the nation’s medical research agency, has launched a new NCI-CONNECT email newsletter that covers news and information from experts on advances in rare brain and spine tumour research, treatment, and education. Sign up for the e-newsletter online here, or email for more information.

HeadSmart publishes new symptoms diary to help track worrying symptoms

A new symptoms diary has been published by HeadSmart, a UK-based awareness campaign which aims to reduce brain tumour diagnosis times in children and teenagers by helping parents and healthcare professionals better recognise the signs and symptoms. The new document is for parents/caregivers or teenagers who are concerned about symptoms and can be printed and taken to a medical appointment. Download the symptoms diary via the HeadSmart website here.

Research roundup

Clinical trial of nivolumab immunotherapy in elderly glioblastoma patients underway in Australia

 A randomised phase 2 clinical trial of the immunotherapy agent nivolumab in combination with standard temozolomide chemotherapy, compared to temozolomide alone, in elderly (65 years+) glioblastoma patients has commenced at the NHMRC Clinical Trials Centre in Sydney, Australia. The trial, also known as NUTMEG (NivolUmab and TeMozolomide vs Temozolomide alone in newly diagnosed Elderly patients with Glioblastoma), aims to recruit 102 patients across up to 18 sites in Australia and the study may be extended into a larger phase 3 trial, depending on results. Read more about the trial online here. There will be NUTMEG trial-in-progress posters presented at both the EANO Congress and SNO 2018 later this year. Visit the COGNO website for further information on this and other trials being coordinated in this area.

Epigenetic analysis of glioblastoma may predict outcome and aid precision medicine, study finds

A research group at the CeMM Research Center for Molecular Medicine of the Austrian Academy of Sciences, analysed epigenetic markers (DNA methylation) in more than 200 glioblastoma patients, focusing on the changes that occur during glioblastoma disease progression. Epigenetic modifications do not alter the genetic sequence but may alter how genes are expressed (turned 'on' or 'off'). The study, published in Nature Medicine, identified a variety of epigenetic changes linked to glioblastoma growth and patient survival. The research was performed in close collaboration with scientists at the Medical University of Vienna and clinicians at eight hospitals throughout Austria. Read more. (Full paper available here.)

Combination immunotherapy shrinks melanoma brain metastases, phase 2 study concludes

Results from a phase 2 clinical trial of the checkpoint inhibitors ipilimumab and nivolumab in patients with melanoma skin cancer that had spread to the brain found that the therapy had “clinically meaningful” effects. Published in the New England Journal of Medicine, of the 94 patients in the single-arm study who each had a minimum follow-up of nine months, 26 percent had a complete response, 30 percent had a partial response and 2 percent had stable disease. The safety profile of the treatment regimen was similar to that seen in melanoma patients without brain metastases: fifty-two patients (55 percent) had a grade 3 or 4 side effect (including events involving the central nervous system in 7%), with 19 patients having to leave the trial. Read more.

Large collection of brain tumour data now freely accessible to researchers worldwide

A database of brain tumour biomedical data (the “Rembrandt” brain cancer dataset), which contains information on 671 adult patients collected from 14 contributing institutions from 2004-2006, has been made freely available to researchers worldwide. Details of the dataset – a joint initiative of the US National Cancer Institute (NCI) and the National Institute of Neurological Disorders and Stroke (NINDS) – and how it can be accessed have been published in the open-access journal Scientific Data. The authors write that repositories such as this offer “a unique opportunity to ask interesting questions of the molecular anomalies and correlate them to outcomes with the goal of generating novel testable hypotheses for biomarker development to treat patients diagnosed with gliomas”. Read more.

Large study finds no link between exposure to high-frequency electromagnetic fields at work and brain tumours

A large multinational epidemiological study has found no association between occupational electromagnetic field (EMF) exposure and glioma or meningioma diagnosis, according to results published in the journal Environment International. Analysis of nearly 4,000 brain tumour cases and over 5,000 controls using an “improved” exposure assessment approach found no clear statistical associations with EMF exposure (from sources such as radar and telecommunication antennas) and brain tumours, although the authors recommend further investigation. Read more.

Study finds that brain tumours in children with neurofibromatosis 1 are more common than previously thought

Using new radiologic criteria, a study of the brain MRI scans of children diagnosed with the common genetic syndrome neurofibromatosis type 1 (NF1) revealed a frequency of brain tumours considerably higher than previous estimates. Published in Neurology: Clinical Practice, the retrospective review assessed all available brain MRIs from 68 children with NF1 and 46 healthy paediatric controls. 94 percent of children with NF1 had ‘bright spots’ (non-neoplastic T2 hyperintensities) on their MRI scans and 57 percent of these children had at least one lesion deemed likely to be a tumour. Read more.

Study identifies that ‘missing’ T-cells in glioblastoma patients are within bone marrow

A paper published in Nature Medicine has offered an explanation for the apparent lack of the T-cell class of immune cells in the bloodstream of glioblastoma brain tumour patients. Low T-cell counts are thought to contribute to the growth of glioblastoma and account for the limited effectiveness of many immunotherapies. The researchers found that the “missing” T-cells appear in large numbers within the bone marrow and suggest future research into agents that can free these trapped cells, potentially improving the effectiveness of existing and new immunotherapies. Read more.

Study gives direct evidence for the origin of glioblastoma tumours

A research team from South Korea has published evidence in the journal Nature describing how brain stem cells mutate to cause recurrent glioblastoma. The study authors state that their findings represent the first direct molecular and genetic evidence that glioblastoma tumours are birthed from astrocyte-like stem cells that are located in the subventricular region (an area found in the outer walls of the two major ventricle cavities within the brain). Read more.

Researchers develop drug-carrying microparticle treatment to target IDH1/2 mutated gliomas

A report published in Proceedings of the National Academy of Sciences describes a new microparticle therapy that specifically targets glioma cells with mutations in the IDH gene, which are often present in low-grade gliomas. The study showed that microparticles injected directly into the tumour site, delivered sustained release of the anti-cancer drug GMX-1778 (a NAMPT inhibitor). When tested on mice, treatment with these drug-carrying particles extended the survival of mice with IDH mutant-positive gliomas. Read more.

First FDA-approved trial of focused ultrasound to open blood-brain barrier announced

A new clinical study will assess therapy using MRI-guided focused ultrasound, a therapy which aims to open the blood-brain barrier to deliver drugs to glioblastoma tumours, it has been announced. The approach sees a precise region within a tumour being targeted with ultrasound, while injected microbubbles are circulating within the bloodstream, which causes temporary openings in the walls of the brain's blood vessels. The U.S. Food and Drug Administration (FDA) approved the clinical trial in October 2017 and this is the first study to use this technology and approach in the USA. The first trial is planned to enrol up to 15 patients with suspected glioblastoma. Read more.

PET scan radiotracer uptake in glioblastoma may predict survival, study finds

Measuring the uptake of the radiotracer F-18 fluorothymidine (FLT) with PET (positron emission tomography) scans may help predict glioblastoma patient survival, according to a 30-patient study published in the European Journal of Nuclear Medicine and Molecular Imaging. Study findings also showed that changes in standardized uptake values (SUVs) of FLT on PET scans over time following chemotherapy and radiotherapy were linked to improved survival. The technique was not able to distinguish between true progression and “pseudoprogression”, as defined by MRI scans, however. Read more (full paper).

Clinical trial results of engineered poliovirus for glioblastoma: expert commentary

A widely-publicised phase 1 study of a genetically engineered poliovirus treatment in glioblastoma is the subject of a feature piece in Neurology Today. The expert commentary finds that the early clinical study is “provocative”, while urging caution “against getting over-enthused about the results at this point in testing”. Read the article online here.

Studies links radiation therapy in paediatric brain tumours to impaired memory formation and hormone deficiencies

A study published in the Journal of Neuroscience has suggested that radiation therapy for paediatric brain tumours may make it more difficult for children to form new memories of specific events. Evaluations of memory in thirteen 7- to 18-year-old male and female patients who had received radiotherapy for posterior fossa tumours (those in the lower brain regions near the brain stem and cerebellum), including medulloblastoma, showed that recall of a distant life event from before cancer diagnosis, such as a family trip, appeared normal but more recent memories contained fewer details, compared to those of a control group of 28 healthy children. Read more. A separate paper published in the Journal of Clinical Oncology has detailed the association between radiation dose and endocrine dysfunction (hormone deficiencies). Younger age and a higher radiation dose to the hypothalamus and pituitary were correlated with increased rates of hormone deficiency. Read more.

Genetically engineered ‘mini-brains’ developed to simulate brain tumour formation

A team of Austrian researchers has successfully developed three-dimensional cerebral organoids (‘mini-brains’) that model the growth of brain tumours, such as glioblastoma. Described in a report published in Nature Methods, the lab-grown miniature organs contain diverse cell types found in the actual human brain and have been genetically engineered to develop the mutations found in human brain tumours. It is hoped these neoplastic cerebral organoids (neoCOR) will serve to help better understand brain tumour growth and for the testing and development of drugs. Read more.

Company News

Phase 3 trial of Tocagen’s Toca 511 & Toca FC in recurrent high grade glioma to continue without modification after interim analysis

Tocagen has announced that the Toca 5 pivotal Phase 3 trial is to continue without modification following a planned first interim analysis of data by an Independent Data Monitoring Committee (IDMC). The randomized, multi-center study is evaluating the safety and efficacy of Toca 511 & Toca FC (a two-part cancer-selective immunotherapy) compared to standard of care in patients undergoing resection for recurrent high grade glioma. Read more (company press release).

Phase 1 trial of Moleculin’s WP1066 in glioma and brain metastases opens for enrolment

Moleculin has announced that a phase 1 clinical trial of WP1066 for the treatment of recurrent/progressive malignant glioma and brain metastases from melanoma is now open for patient enrolment. The is the first clinical study using WP1066, an agent that targets the STAT3 pathway in cancer cells. The STAT3 pathway makes cancer cells divide, increases new blood vessels to the tumour, causes the cancer cells to move throughout the body and brain, and avoids them being detected by the immune system. Read more (company press release). (Clinical trial details available online here.)

AIVITA Biomedical announces initiation of the first clinical site for ROOT OF CANCER glioblastoma trial

AIVITA Biomedical has announced the initiation of the first clinical site for a phase 2 trial of its ROOT OF CANCER treatment in patients with newly diagnosed glioblastoma. Approximately 55 patients with newly diagnosed glioblastoma will be enrolled with the intent to receive the therapy, which is an autologous dendritic cell vaccine consisting of autologous dendritic cells loaded with autologous tumour-associated antigens. Read more (company press release). (Clinical trial details available here.)

And in other news...

Nominations open for EFNA Advocacy Awards

This year, the European Federation of Neurological Associations (EFNA) is holding its biennial Advocacy Awards programme. These awards recognise an individual or patient group for their contribution toward promoting and supporting advocacy for people with neurological disorders in Europe. The IBTA is a member of EFNA, which is an international organisation bringing together umbrella organisations involved in patient advocacy for brain and brain-related disorders. The 2018 EFNA Awards focus on young patient advocates (aged up to 40 years). Applications are invited from Europe-based IBTA supporting patient advocacy organisations. The nomination deadline is Friday 7 September. More information is available online here

Cancer Research UK blog series: better understanding of the brain will lead to better treatments

The third in a six-part blog series exploring the challenges facing brain tumour research, the latest article by Cancer Research UK looks at how our improving knowledge of brain tumour biology will help us design better drugs in the future. Read more.

Conference and event news

IBTA’s Kathy Oliver to present at ECCO Summit 2018

We are delighted to announce that IBTA Co-Director Kathy Oliver will be speaking about the All.Can patient survey at a ‘New Horizon’ session at the European Cancer Summit (ECCO 2018) “From Science to Real-Life Oncology”, which takes place from 7 - 9 September, in Vienna, Austria. The IBTA is one of the All.Can stakeholder organisations.  All.Can is an international multi-stakeholder policy initiative that is focused on improving efficiency in cancer care. Find out more about this year’s ECCO Summit here.

“Joining Forces” Workshop to be run by Brain Tumour Research, the UK Medical Research Council and the British Neuroscience Association in October

It has been announced that a workshop hosted jointly by the UK-based charity Brain Tumour Research, the UK Medical Research Council (MRC) and the British Neuroscience Association (BNA) is to take place on 23 October 2018 at the BEIS Conference Centre, London, UK. Entitled “Joining Forces for Greater Impact”, this free event aims to foster multi-disciplinary collaborations between researchers in the neuroscience and brain tumour communities and is a direct result of a report into brain tumours by a UK Parliamentary committee (the Task and Finish Working Group on Brain Tumour Research) that was published in February 2018. Read more and sign up for the workshop here (see also 'Scientific Conferences' below).

Patient advocacy events

Brain Tumour Foundation of Canada National Conference 2018 (Toronto)
19-20 October 2018
Toronto, Canada

Women's Retreat for Brain Cancer
19-21 October 2018
Geelong, Victoria, Australia

12th International Brain Tumour Awareness Week
20-27 October 2018
Activities will be held around the world to raise awareness of brain tumours

Brain Tumour Foundation of Canada National Conference 2018 (Montreal)
27 October 2018
Montreal, Canada

Upcoming Scientific Conferences

European Cancer Summit (ECCO 2018) "From Science to Real-Life Oncology"
7-9 September 2018
Vienna, Austria

The Brain Tumour Charity Nurse and Allied Health Professional Conference: "Difficult Conversations"
19 September 2018
Birmingham, UK

ESO Masterclass in Neuro-Oncology: Multidisciplinary Management of Adult Brain Tumours
20-22 September 2018
Milan, Italy

8th Annual Brain Metastases Research and Emerging Therapy Conference
21-22 September 2018
Marseille, France

2018 Tumor Section Satellite Symposium: Innovative Technology that Advances Patient Care
5-6 October 2018
Houston, Texas, USA

11th Annual Scientific Meeting of the Co-operative Trials Group for Neuro-Oncology (COGNO)
7-9 October 2018
Brisbane, Queensland, Australia

13th Congress of EANO
10-14 October 2018
Stockholm, Sweden
If you are attending, please do visit the IBTA booth

ESMO 2018 Congress
19-23 October 2018
Munich, Germany
If you are attending, please do visit the IBTA booth

Neurosciences and Brain Tumour Research: Joining Forces for Greater Impact Workshop
23 October 2018
London, UK

15th Annual Meeting of the Asian Society for Neuro-Oncology (ASNO 2018)
25-28 October 2018
Beijing, China

3rd CNS Anticancer Drug Discovery and Development Conference
14-15 November 2018
New Orleans, Louisiana, USA

23rd Annual Scientific Meeting for the Society for Neuro-Oncology (SNO 2018)
15-18 November 2018
New Orleans, Louisiana, USA
If you are attending, please do visit the IBTA booth

50th Congress of the International Society of Paediatric Oncology (SIOP 2018)
16-19 November 2018
Kyoto, Japan

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

If you are organising or are aware of a forthcoming patient or brain tumour advocacy event or a scientific conference taking place in 2018 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  


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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.

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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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