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IBTA e-News

The monthly bulletin for our
international brain tumour community

March 2016

Headline news

Rindopepimut (Rintega®) phase III clinical trial discontinued

In a company press release, Celldex Therapeutics has announced that the independent Data Safety and Monitoring Board has determined, based on a preplanned interim analysis, that continuation of the Phase III ACT IV study of rindopepimut (Rintega®) in patients with newly diagnosed EGFRvIII-positive glioblastoma will not reach statistical significance for overall survival in patients with minimal residual disease, the primary endpoint of the study, as both the rindopepimut arm and the control arm are performing on par with each other.  In the ACT IV study, rindopepimut has performed consistently with prior Phase II studies but the control arm has significantly outperformed expectations (Hazard ratio = 0.99; median OS: rindopepimuit 20.4 months vs control 21.1 months). Read more (company press release).

Consortium aims to advance fight against rare childhood brain tumours

A global web-based registry that collects clinical and biological data on rare childhood brain tumours has been launched by Dr Annie Huang, neuro-oncologist at the Hospital for Sick Children, Toronto, Canada, and her collaborators. The registry is intended to contribute to studies of these rare diseases, which have been poorly studied to date. The centralised repository will give investigators, doctors and parents around the world easier access to information, leading to better diagnostic awareness and precision, and ultimately better treatment. Find out more about the Rare Brain Tumor Consortium here (information on joining the registry available here).

Treatment news

Update on latest advances in glioblastoma care for elderly patients

In a video interview, Dr Patrick Wen, Director of the Center for Neuro-Oncology at Dana-Farber Cancer Institute (USA), discusses and explains the latest evidence-based treatment for glioblastoma in elderly patients. Watch the video and read more here. In a study also published this month, in the Journal of Neuro-Oncology, a prospective study of 76 glioblastoma patients aged over 69 found that combined temozolomide and radiotherapy was only effective in patients with methylated MGMT tumours. Read more (abstract).

Research news

Protein found to predict glioblastoma aggressiveness and resistance to treatment

Published in Scientific Reports, an analysis by researchers at the Moffitt Cancer Center of 527 glioblastoma samples from The Cancer Genome Atlas has identified the protein BIRC3 as a predictor of tumour aggressiveness and resistance to temozolomide and radiotherapy. Expression of this protein in tumours may represent a target for future therapies, the authors say. Read more.

The future of brain tumour detection blood tests

The potential of using liquid biopsies – or blood tests – to detect tumour DNA in the blood was discussed at The Future of Genomic Medicine IX conference, held at Scripps Institution of Oceanography, California, USA, on 3 – 4 March. Among the speakers was Dr Velculescu, from Johns Hopkins University in Baltimore, USA, who said that liquid biopsies might provide answers for patients for whom a tissue biopsy is not possible. Read more (free registration required).

PGK1 enzyme coordinates brain tumours’ ability to ferment glucose

A study published in Molecular Cell has found that the enzyme PGK1 regulates what is known as the Warburg effect in glioblastoma cells: glioblastoma and other cancer cells readily ferment glucose into lactic acid in a process called glycolysis, which occurs at low levels in healthy cells. The researchers explored the mechanism by which PGK1 coordinates this process and promotes tumour growth. Read more.

Glioblastoma cells can thrive at low oxygen levels, study finds

Published in the journal PeerJ, a study has found that glioblastoma cells are unaffected by oxygen levels that would harm normal cells (1-8% O2). It was only at extremely low oxygen levels (0.1% O2) for prolonged periods (24-48 hrs) that some cell death occurred and growth was temporarily halted. The authors conclude that the majority of cells in high-grade gliomas will be unaffected by low oxygen supply, which has implications for the development of future treatments. Read more (open access paper).

Medulloblastoma tumours have different genetics after treatment, study finds; animal experiments point to drug combinations that may be effective in medulloblastoma

In a study using mice with medulloblastoma tumours, research published in Nature has found that after resection and radiotherapy, recurrent tumours had genetically altered. This ‘substantial genetic divergence’ was also observed in 33 samples of children’s medulloblastoma tumours and may explain why previous clinical trials of targeted therapy have failed, the authors conclude. Read more.
Separate research published in the journal Cell has found drug combinations that may be effective in treating Group 3 medulloblastomas, a subtype that has a very poor prognosis. In mice, histone deacetylase inhibitors (HDACIs) worked together with phosphatidylinositol 3-kinase inhibitors (PI3KIs) to reduce tumour growth. Several HDACIs and PI3KIs are currently in development or are being used to treat certain cancers. Read more.

Analysis finds four new subtypes of childhood CNS-PNET tumours

Published in Cell, a comprehensive analysis of the genetics and molecular features of primitive neuroectodermal tumors of the central nervous system (CNS-PNET), a rare and aggressive childhood brain tumour, identified four new tumour subtypes that have distinct genetic alterations, microscopic appearances and clinical features. Read more.

Paediatric brain tumour research: call for grant applications

Children with Cancer UK has made a call for research applications that are led by a UK research institute that aim to enhance the effectiveness of therapy through improved drug delivery systems and/or use of novel technologies. The maximum award is £350,000, for projects lasting up to three years. The deadline for expressions of interest is Thursday 19th May 2016. Input from relevant brain tumour patient advocacy organisations will be an integral part of each project. Read more.

Nanoparticle markers developed that may improve surgical accuracy

A report in Nature Medicine has described an imaging technique that uses nanoparticle technology to highlight brain tissue during surgery and for diagnosis. When nanoparticle markers were injected into the blood of mice with brain tumours, they were selectively taken in by the tumour tissue and could be visualised with a Raman spectroscopy instrument. Read more.

Company news

Tocagen expands Phase 2/3 clinical trial in recurrent glioblastoma/anaplastic astrocytoma to include Canada

The currently-recruiting clinical trial of Tocagen’s Toca 511 & Toca FC – a gene therapy platform that uses retroviral replicating vectors – has been expanded internationally and is now enrolling patients in Canada, the company has announced. Read more (company press release). Trial details available here (

FLAG Therapeutics’ FLAG-003 granted orphan drug status for the treatment of glioma

FLAG Therapeutics has announced that FLAG-003 – an anti-angiogenesis and anti-tubulin therapy – has been awarded orphan drug designation by the US Food and Drug Administration (FDA) for the treatment of glioma (including glioblastoma), which gives the company marketing exclusivity and opportunity to access additional funding and support. Read more (company press release).

MagForce highlights their progress in brain tumour therapies in first shareholder letter of 2016

In its first letter to company shareholders of 2016, MagForce has given details of their plans to expand its Nanotherm therapy to give access to more patients. Presently being offered through four NeuroActivator clinics in Germany, Nanotherm treatment uses magnetic nanoparticles that are introduced into brain tumour tissue and are then heated via a magnetic field to destroy tumour tissue. Read more (company website).

Orphan drug designation awarded to DelMar Pharmaceuticals’ VAL-083 for childhood medulloblastoma

The US FDA has granted orphan drug status for VAL-083, an alkylating chemotherapy drug, for the treatment of childhood medulloblastoma. Developed by DelMar Pharmaceuticals, VAL-083 is currently being trialled in glioblastoma and other cancers. Read more (company press release).


New interactive map of our Alliance now online

A new interactive map has been added to Our Alliance page on the IBTA website. The scalable map gives links to the brain tumour patient organisations in the IBTA Alliance and shows the countries (111) in which the annual IBTA magazine, Brain Tumour, is distributed. Please let us know if you are aware of a brain tumour patient advocacy organisation that is not included on the map. To explore the map, click here.

Official IBTA report of Second World Summit of Brain Tumour Patient Advocates published

The Second World Summit of Brain Tumour Patient Advocates took place from 25th to 27th October 2015 in Sitges, near Barcelona, Spain, and was attended by more than 70 participants from 27 countries. The conference was an unequivocal success and provided a unique opportunity for patient advocates to share information, exchange best practice and discuss and debate some of the pressing topics in the field of brain tumours today. The official report, written by IBTA team member Dr Stuart Farrimond, has now been published and can be read online here.

Community news

Launch of new brain tumour organisation in Cameroon

A brain tumour patient advocacy organisation has been launched in Cameroon, Africa by Irene Azong-wara. Irene attended the IBTA’s Second World Summit of Brain Tumour Patient Advocates in Spain in October 2015 and was so inspired by what she learned at the Summit that on returning to her home country, she launched Jacob’s Hope Foundation for brain tumours and other cancers. The Foundation is named after Irene’s father who was diagnosed with a brain tumour. See the Foundation’s Facebook page here.

‘Heading to the Hill’ for brain tumours

The National Brain Tumor Society (USA) will be holding their annual advocacy event, ‘Head to the Hill’, in Washington, DC, USA on 2 - 3 May 2016. The two-day event has become a powerful vehicle to ensure the voice of the brain tumour community is heard by the US government and will include advocacy training and legislative visits on Capitol Hill. Find out more and register here.

Ependymoma Awareness Day 2016

The fifth Ependymoma Awareness Day will take place this year on the 2nd May. It is an international effort organised by the Collaborative Ependymoma Research Network (CERN) Foundation and a mass butterfly release will take place on the day in Washington DC, USA, to coincide with the ‘Head to the Hill’ event (above). Read more.

Date set for UK Parliament to debate brain tumour research funding

The issue of insufficient funding for brain tumour research will be debated in the UK Parliament on 18th April 2016. This follows the success of a UK e-Petition, launched by Maria Lester (née Realf), that gained over over 120,000 signatories by the deadline of 3rd February 2016, meeting the minimum 100,000 signatories required to trigger a Parliamentary debate. The Petitions Committee published their report, Funding for Research into Brain Tumours, on 14th March and the launch of the report was streamed online and can be watched here. The report said that “Brain tumour patients have been let down by a lack of leadership from successive [UK] governments”. (More information on the report is available on the UK Parliament website.) UK charity Brain Tumour Research is calling for UK residents to write to their MP as soon as possible to highlight this crucial issue and to urge MPs to join the debate on April 18th. Read more (letter template available).

Cross-party letter asks for increased brain tumour research opportunities in USA, ABTA announces

A letter that has been signed by 28 members of the US House of Representatives – both Democrat and Republican – requests that brain cancer be included in the Department of Defense’s Peer Reviewed Cancer Research Program (PRCRP), a $50 million competitive grant program. US Congress assigns funding annually but only neuroblastoma and paediatric brain tumours are presently included in the program. The American Brain Tumor Association has been instrumental in bringing about this bipartisan letter. Read more (ABTA website).

And in other news...

Magician Paul Daniels dies of brain tumour in the UK

British magician Paul Daniels has died of a brain tumour aged 77, less than a month after being diagnosed. He was famous in the UK as a TV celebrity and performer. In a BBC video interview, his wife Debbie McGee pays tribute to her late husband, saying she had a ‘dream marriage’.  Read more.

Scientist who finds artistic inspiration in brain tumours

Researcher and artist Dr. Immy Smith has created an art exhibition inspired by brain tumours. In one of her displays she uses two colours to symbolise two types of cells, neural and glial, from which brain tumours arise. “Just as you can make many patterns from just two colours of ink by blending them in different ways or in different amounts, there are many types of brain tumours arising from differential expression of genes in just two cell types,” she said. Read more.

Conference abstract deadlines

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

Abstract submission deadline: 31 March, 2016Click here

British Neuro-Oncology Society (BNOS) Conference 2016
29 June – 1 June 2016
Leeds, United Kingdom
Abstract submission deadline: 3 May, 2016Click here

European Society for Medical Oncology (ESMO) 2016 Congress
7-11 October 2016
Copenhagen, Denmark
Abstract submission deadline: 11 May, 2016 (Late-breaking abstracts 23 August, 2016) – Click here

Upcoming conferences and events

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

Registration now open:

17th International Symposium on Pediatric Neuro-Oncology (ISPNO 2016)
12-15 June 2016
Liverpool, United Kingdom – ‘early bird’ rates now extended to 1 April, 2016 - Click here to register.

1st International Meeting on Meningioma
17-18 June 2016
Toronto, Ontario, Canada – Click here to register



2nd EORTC Cancer Survivorship Summit
31 March-1 April 2016
Brussels, Belgium


68th Annual Meeting of the American Academy of Neurology (AAN)
15-21 April 2016
Vancouver, BC, Canada

107th Annual Meeting of the American Association for Cancer Research (AACR 2016)
16-20 April 2016
New Orleans, Louisiana, USA

22nd Annual Neuro-Tumor Club Dinner Meeting at AACR
18 April 2016
New Orleans, Louisiana, USA

5th Symposium of World Federation of Neurosurgical Societies (WFNS)
17-22 April 2016
Tehran, Iran

84th Annual Meeting of the American Association of Neurological Surgeons (AANS)
30 April-4 May 2016
Chicago, Illinois, USA

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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