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IBTA e-News

The monthly bulletin for our
international brain tumour community

February 2015


New website now live!

We are delighted to announce the launch of the International Brain Tumour Alliance's brand new website at The website has undergone an extensive overhaul and now has a fresh new look, greatly improved navigation and is optimised for easy reading on computers and mobile devices alike. You should now find much more relevant information than ever before, including a news section, a map of the IBTA alliance’s international reach, useful links and resources, and a clinical trials portal.

Please take a few minutes to explore the new website and we hope you will access it frequently to keep up to date and in touch with our international community. If you have any feedback or suggestions then please do let us know by emailing or replying to this email.

We walked around the world for brain tumours nearly 13 times!

The 2014 Walk Around the World for Brain Tumours was supported by 38 organisations, arranging collectively 113 walks, amassing a grand total of 322,527 miles, equalling just under 13 times around the world at the equator – quite an achievement!  Thank you all so much. Photos and further reports will appear in the 2015 edition of the IBTA’s magazine Brain Tumour which will be published in May. For back issues of Brain Tumour magazine, click here.

Please be sure to register your walks for this year by going to our new website and completing the register/report form here.  Wouldn’t it be great if we can walk even further in 2015?

Patient organisation news

Save lives: be a brain tumour tissue donor

The IBTA is proud to be a partner in the ‘The Brain Tumour Tissue Campaign’, launched on 24th February by Brainstrust in the UK. Surveys show that 90% of brain tumour patients in the UK are happy for their removed tumour tissue to be used for research, but only 30% of samples are presently consented for use. The campaign aims to raise this number to 80%. Read more.

European Patients’ Academy on Therapeutic Innovation (EUPATI) expert training course now recruiting

The EUPATI Expert Training Course offers patients and patient advocates expert-level training in medicines research and development. The course, which is open to European patient advocates across all disease areas, covers the process of medicines development, basic research, clinical trials, drug safety, benefit-risk assessment and health technology assessment. Applications are open until  31 March 2015.  The course starts in September 2015 and runs for 14 months. See the course description and application form here.

Surviving Terminal Cancer film premieres in London, New York and online

“Surviving Terminal Cancer” is a documentary following the story of Ben Williams (a glioblastoma survivor who was diagnosed in 1995) and other long term brain tumour survivors. This privately-funded film premiered in London on February 4th; New York on February 18th, and is now available for free streaming online.Official site.

Oscar’s Angels certified by ARS

Toulouse-based (France) charity Oscar’s Angels has been officially certified by the Agence Regionale de Sante (ARS) for its project “The volunteer’s role in Pediatric Neuro-Oncology. The certification is the French Ministry of Health’s highest recognition for health-related projects presented by hospitals, health organisations and charities.  The certification highlights exemplary and innovative projects that serve and benefit patients' families. Read more.

FDA-related news

Celldex's rindopepimut (Rintega®) given Breakthrough Therapy Designation

Based on trial data available to date, the US Food and Drug Administration (FDA) have granted rindopepimut, an investigational immunotherapy for glioblastoma, its Breakthrough Therapy Designation. The criteria for this designation require preliminary clinical evidence demonstrating that the drug may have substantial improvement on at least one clinically significant endpoint over existing therapy. Read more.

FDA looks to streamline patient access to experimental drugs

The US Food and Drug Administration (FDA) has put forward new draft guidance that, if adopted, will simplify the process of patients accessing experimental drugs under its expanded access, or compassionate use, program. A new application form is also designed to help physicians wishing to enrol a patient and is expected to take 45 minutes to complete compared to 100 hours for the present form. Read more.

Orphan drug designation awarded to: Saposin C,  RestorGenex’s RES-529 and Stemline Therapeutics’ SL-701 glioma treatment

The US Food and Drug Administration (FDA) has granted orphan drug designation for RES-529, an agent developed by RestorGenex Corporation that interferes with specific intracellular reactions in brain tumour cells. Trials of the drug for glioblastoma are planned for 2016. Read more. Orphan drug status has been granted for SL-701, a cancer vaccine that is injected subcutaneously that is developed by Stemline Therapeutics Inc., and is in phase II clinical trials for glioblastoma. Read more. Bexion Pharmaceuticals LLC has also announced that Saposin C, a key ingredient in their proprietary BXQ-350 nanotherapy, has been granted orphan status. Read more.

Oncolytics Biotech request orphan drug status for REOLYSIN in childhood brain tumours

REOLYSIN is a modified virus treatment currently in phase I, II and III trials for a variety of cancers. Oncolytics Biotech Inc. has requested that the FDA awards the drug orphan status for use in childhood high grade glioma patients. Read more.

Research roundup

Glioblastoma-targeted immune cells to enter clinical trial

Research published in Science Translational Medicine is to lead to a phase I trial of a new glioblastoma immunotherapy. This approach sees immune cells from a patient being ‘engineered’ to attack glioblastoma cells that express a specific EGFRvIII protein, present in 30% of glioblastoma tumours. Read more.

Stem cells offer hope for repairing radiotherapy-induced brain injury

Cognitive impairment is a problematic side-effect of brain tumour radiation therapy, believed to be due to destruction of neurons' protective myelin-producing cells. Researchers from Memorial Sloan Kettering Cancer Centre, New York, USA, have developed a technique to use specially-cultured human stem cells to replace damaged or lost cells. When tested on rats, cognitive damage brought on by brain irradiation was reversed. Read more.

New statistical method for measuring impact of cancer on children

A new method for assessing the impact of childhood cancer termed years of life lived with disease (YLLD) has been described in research published in Cancer Medicine. Using this measure alongside existing tool, cancer data from the United States in 2009 indicates that childhood brain tumours are the single greatest cause of years of potential life lost. Read more.

No link between mobile phones and brain tumours, study finds

Research conducted at the University of Auckland, New Zealand, has found no link between mobile phone use and brain tumour incidence over a fifteen year period. The study published in Australian and New Zealand Journal of Public Health shows that primary brain tumour  rates in New Zealand decreased between 1995 and 2010, despite increasing mobile phone use. Read more.

On-off switch for tumour growth found

Research published in Nature Communications has identified a gene (NR2F1) that operates like a ‘master switch’ for several tumour cell types; when the gene is switched on, previously dormant cells divide abnormally. Read more.

Three genes that help a glioblastoma tumour survive radiation therapy

Findings published in Stem Cell Reports show that three genes can operate together to give a glioblastoma cell the ability to withstand radiation therapy. These mutations are thought to exist in a subset of glioblastoma cells (stem-like-cells) and could be targets for future treatments. Read more.

Test for new cancer vaccines developed

Researchers from Heidelberg, Germany, have developed a new technique for testing potential cancer vaccines. Called the PLA test, it allows tumour protein that could be used for a vaccine (neoantigen) to be tested for compatibility with the immune system’s cells. Read more.

Veterinary brain tumour surgery success leads to potential human treatment

A technique for destroying tumour tissue using small electrodes called non-thermal irreversible electroporation (N-TIRE) is to be investigated as a potential human brain tumour treatment following dog surgery successes, first published in 2011. Read more.

Rare childhood brain tumour syndrome shows ‘great flood’ of mutations

Biallelic mismatch repair deficiency (bMMRD) is a syndrome causing brain tumours in children due to a defect in their cells’ ability to repair DNA damage. Researchers from The University of Nottingham, UK, have identified a specific secondary mutation (in a polymerase gene) that triggers a subsequent rapid cascade of mutations leading to a malignant tumour in these individuals. It is hoped that knowledge of this ‘secondary mutation’ will lead to a better understanding of the development of more common cancers. Read more.

‘Low radiation’ radiosurgery tracer tested on brain tumour patients

Currently, radioguided surgical techniques allow surgeons to detect any unremoved tumour during an operation via radiation-emitting tracers that are preferentially taken up by a tumour. Existing tracers produce gamma or beta-plus radiation, but a feasibility study on meningioma and high grade glioma patients published in The Journal of Nuclear Medicine demonstrates that a beta-minus tracer, Y-90 DOTATOC, may offer a low radiation exposure alternative. Read more.

Autism research leads to glioblastoma discovery

Research published in Nature Communications has identified that high levels of the protein NHE9 in glioblastomas cells is associated with a poorer outcome. The protein appears to be vital for normal endosome (a cell’s internal ‘cargo carrier’) function. The researchers also noted that NHE9 function is blocked in many forms of autism. Read more.

Gene may predict hearing loss in patients taking cisplatin

Research published in Nature Genetics this month identifies a gene, ACYP2, closely linked to hearing loss in children receiving cisplatin treatment. The finding was the result of analysis of the genome of 238 children with newly diagnosed brain tumours; it is hoped that this discovery could help better understand and anticipate cisplatin side-effect risk factors. Read more.

Treatment News

Dealing with Avastin-related side-effects

A systematic review published in The Oncologist provides a practical approach for dealing with bevacizumab (Avastin)-related toxicities. The report considers their incidence, causal mechanisms, risk factors and available treatments. Read more (subscription required/Pay per view).

Hormonal contraceptive use and risk of glioma

A widely publicised study published in the British Journal of Clinical Pharmacology has found that using hormonal contraceptives may increase an individual’s risk of glioma. The analysis of Danish health registry data compared 317 female glioma patients with 2,126 controls. However the validity of the study has been challenged in the media. Dr David Gaist, study leader, emphasized that the findings need to be interpreted with care, as discussed in the published research paper. Read more.

New online tool lets brain tumour patients search for specialist neurosurgeons

The Subcortical Surgical Group (SSG) has launched their online ‘Physician Locator’, a tool to let US patients find local surgeons with expertise in using new surgical technologies and approaches. Read more.

Glioblastoma trials now recruiting

The Clinical Trials Guide in the latest issue of The ASCO Post features information on fourteen clinical trials actively recruiting patients with new or recurrent glioblastoma. The trials range from pilot through to phase III studies, and include observational studies and imaging studies. Read more.

Through the eye-lid brain tumour surgery aided by 3D printer

Surgeons at the University of Pittsburgh Medical Center successfully removed a brain tumour using a minimally invasive ‘through-the-eye socket’ approach (transorbital neuroendoscopic surgery). The technique was first pioneered at the University of Washington Medical Center, but this widely publicised operation was aided by a 3D printed model of the patient’s skull and brain tumour. Read more.

New approach in glioblastoma trials: give drug before surgery

Researchers at Barrow Neurological Institute, Phoenix, US, are adopting the novel approach of testing early stage drugs on recurrent glioblastoma patients before they undergo surgery.  A single dose, followed by tumour resection within one day, allows the tumour tissue to be rapidly assessed for drug effectiveness rather than waiting for imaging studies to show changes. Read more (with video).

Repurposing antibiotics as cancer treatments

A proof-of-concept study published in Oncotarget has shown that several widely-used antibiotics kill a variety of cancer stem cells, including glioblastoma, when tested in the lab. Classes of antibiotics that inadvertently damage mitochondria – the cell’s ‘powerhouse’ – also appear to trigger tumour cell death. Read more.

Drug to target ‘fusion proteins’ tested on two glioblastoma patients

A proportion of glioblastoma tumours express the protein FGFR-TACC, an abnormal fusion of two normal proteins. Research published in Clinical Cancer Research tests the hypothesis that this may be a target for glioblastoma treatment. Two glioblastoma patients whose tumours possess the FGFR-TACC protein were given an experimental drug (JNJ-42756493) that targets FGFR. Clinical improvements were observed. Read more.

High blood pressure while taking Avastin may predict its effectiveness

Bevacizumab (Avastin)-induced hypertension may be a predictive marker for survival in recurrent glioblastoma patients according to research published in the journal Cancer. Of 82 patients treated with bevacizumab in the study, those who developed hypertension lived significantly longer (11.7 months vs 4.9 months) and had longer progression-free survival (6.7 months vs. 2.5 months). Read more. And in separate research published in The Oncologist, a trial of 19 newly diagnosed glioblastoma patients showed no benefit to bevacizumab when combined with standard chemotherapy and radiotherapy. Read more.

Company news

Accurexa start developing agent to deliver chemotherapy directly to tumours

Accurexa Inc, who manufacture Branchpoint (a device that delivers drugs into the brain via a catheter during surgery) have announced they are developing a new product, ACX-31, which will deliver the chemotherapy drug temozolomide directly to the tumour site. Read more.

Northwest Biotherapeutics’ DCVax-L approved for trials in Canada

DCVax-L, a personalised immune therapy for glioblastoma presently in phase III trials, has been approved for use in two sites in Canada by Health Canada (the Canadian health authority). Read more.

Upcoming events: March-April 2015

Keep up to date with future scientific conferences and events on the IBTA website conferences page here. Below is a selection of forthcoming events:

The Royal College of Radiologists Neuro-Oncology Meeting
10 March 2015
Leeds, UK

21st Annual Blood-Brain Barrier Consortium Meeting
19-21 March 2015
Stevenson, Washington, USA

The Indian Society of Neurooncology Conference (ISNOCON)
26-29 March 2015
Kochi, Kerala, India

EORTC-EANO-ESMO 2015 Trends in Central Nervous System Malignancies
27-28 March 2015
Istanbul, Turkey

106th Annual Meeting of the American Association for Cancer Research (AACR)
18-22 April 2015
Philadelphia, Pennsylvania, USA

21st Annual Neuro-Tumor Club Dinner Meeting at AACR
Philadelphia, Pennsylvania, 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 © 2015 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-newsletter (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-newsletter).  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-newsletter 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.

Other websites linked from the IBTA e-newsletters 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-newsletter may not necessarily be those of the International Brain Tumour Alliance.

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