This is the latest edition of the IBTA e-News bulletin. Find out more about us at
Can't read this email?
View it in your browser

Forward this to a friend
Share this:
share on Twitter
Like The IBTA e-News October 2022 on Facebook
Google Plus One Button

IBTA e-News

The monthly bulletin for our
international brain tumour community
October 2022

Leading news

International Brain Tumour Awareness Week 2022 is here!

The 2022 International Brain Tumour Awareness Week (Saturday, 29 October to Saturday 5th November 2022, inclusive) is now upon us. This special week is a celebration of awareness-raising activities in which the international brain tumour community unites to draw attention to the challenges of brain tumours and the need for an increased research effort.

We would love for you to get involved. Anything which you can do to raise awareness of the unique challenges of a brain tumour diagnosis and the need for a special response and an increased research effort would be greatly appreciated by the international brain tumour community. For example, you could organise a virtual group walk, jog or cycle ride; contact your local media and tell them your story; post awareness messages on social media; have a tea party or quiz with friends and family in person or over Zoom to raise funds for vital brain tumour research; organise an educational webinar about brain tumours; launch educational resources online; etc.

If you are able to take part in any kind of activity, no matter how large or small, we would love to hear about it. We invite you to please register or report your Awareness Week activity through our online form.

An International Brain Tumour Awareness Week toolkit with FAQs is available on our website here. The social media hashtag for sharing news about events, activities and articles is #IBTAWeek.

If you are looking for brain tumour charities and organisations to support or get in touch with during this special week, a list of organisations in your country can be found on our interactive IBTA Alliance Map here.


Central Brain Tumor Registry of the United States (CBTRUS) annual statistical report of primary brain tumours published

A comprehensive statistical report on brain tumours in all ages in the United States has been published in the journal Neuro-Oncology. Conducted in collaboration with the Centers for Disease Control and Prevention (CDC) National Program of Cancer Registries (NPCR) and the National Cancer Institute (NCI) Surveillance, Epidemiology, and End Results (SEER) program, the report is an analysis from the Central Brain Tumor Registry of the United States (CBTRUS) for the period 2015–2019. CBTRUS is the largest population-based registry of primary brain and other central nervous system (CNS) tumours in the United States. Key findings include: a mortality rate from brain tumours of 4.41 per 100,000 population (or 16,853 deaths per year); the incidence rate was higher in females compared to males (27.62 versus 21.60 per 100,000) and non-Hispanic persons (of any race) compared to Hispanic persons. Besides being the first CBTRUS Report to present incidence rates for selected molecularly-defined brain and other CNS tumour histopathologies for diagnoses years 2018 and 2019, for the first time CBTRUS reports approximately 28.3% (126,345) of all brain and other CNS tumours were malignant and 71.7% (319,447) were non-malignant, which makes non-malignant tumours more than twice as common as malignant tumours. 

This report follows last month’s CBTRUS Statistical Report targeting childhood and adolescent brain tumours in persons ages 0-19, which was for the period 2014–2018. Read more (full report). 

ECO report on "Cancer Services Disruptions During the War in Ukraine"

The European Cancer Organisation (ECO) launched a new report ‘Cancer Services Disruptions During the War in Ukraine’ on 17 October ahead of the World Cancer Congress in Geneva, Switzerland. The report builds upon results from a joint multidisciplinary survey conducted by the ECO-ASCO Special Network on the Impact of the War in Ukraine on Cancer in June-July 2022, co-developed by a number of organisations including the ECO Patient Advisory Committee (of which IBTA Director Kathy Oliver is Co-Chair) and targeted cancer services and patient organisations active in countries neighbouring and surrounding Ukraine (Czech Republic, Estonia, Hungary, Latvia, Lithuania, Moldova, Poland, Romania, and Slovakia). The report shows in particular that over half of responding organisations experience some form of capacity issue when it comes to supporting Ukrainian refugees with cancer. Visit the ECO website to download the report and find out more about the insights it reveals. Read more.

“Brilliance! 2022” – the IBTA’s virtual exhibition of creative works from the global brain tumour community

During International Brain Tumour Awareness Week 2022, the IBTA will once again be launching “Brilliance!”, a virtual exhibition of creative works from the international brain tumour community. We’ve had a wonderful response from brain tumour patients, caregivers and healthcare professionals around the globe who have submitted stunning creations to the “Brilliance! 2022” exhibition catalogue in a wide range of different mediums and styles. Look out for our launch announcement during International Brain Tumour Awareness Week. More information on the background to “Brilliance!” can be found here. The 2021 “Brilliance!” exhibition catalogue can be viewed online here.

Invitation for brain tumour patients, caregivers and healthcare professionals to take part in an important survey to help improve patient-reported outcomes research

The international Response Assessment in Neuro-Oncology – Patient-Reported Outcome (RANO-PRO) working group has initiated a study to provide guidance on the use of patient-reported outcomes (e.g., questionnaires to assess a patient’s symptoms and signs) in people with brain tumours. The purpose of this study is to evaluate whether the items in the questionnaires that are currently completed by people with a brain tumour are still relevant. Patients, their informal caregivers and healthcare professionals are asked to indicate which symptoms and other issues are most relevant to people with a brain tumour, by means of a survey that takes around ten minutes. You can participate in this very important study here. Your voice in this survey would be greatly appreciated!

Treatment news 

Palliative and end-of-life care for people affected by malignant brain tumours: new paper published 

A new systematic review published in Neuro-Oncology by Johan Koekkoek, Tobias Walbert et al reveals updated insights and an overview of palliative care options for people with malignant brain tumours.  The review is based on the European Association of Neuro-Oncology (EANO) palliative care guidelines for adult patients released in 2017. The authors of this latest systematic review state that: “Early palliative care interventions are essential to define goals of care and minimize symptom burden in a timely fashion. Interventional studies that address pain, fatigue, and psychiatric symptoms as well as (the timing of) early palliative care are urgently needed.” Read more.

Consensus review on diagnosis, management, and future directions in IDH-mutant gliomas published

The Society for Neuro-Oncology (SNO) has published a consensus review on the diagnosis, management, and future treatment directions for gliomas that carry a mutation in the isocitrate dehydrogenase (IDH) gene. Published in the journal Neuro-Oncology and making reference to the latest research and ongoing clinical trials, the paper discusses classification, imaging, treatment guidelines for this tumour type as well as therapies currently in development. Read more (full article).

Research news 

Drugs that target circadian clock proteins may be future glioblastoma treatments, lab study suggests

Molecules within cells that control how they respond to a person’s body clock throughout the day, called circadian clock proteins, appear to be key players in glioblastoma tumour growth and are potential targets for new drugs, according to lab-based research published in the journal Proceedings of the National Academy of Sciences. In experiments on glioblastoma stem cells – those cells believed to drive tumour growth – researchers used artificial intelligence algorithms to discover that the experimental glioblastoma drug SHP656 in phase 1 clinical trials targets a circadian clock protein called CRY2. By refining the drug to better disrupt CRY2, the new drug (called SHP1703) was more effective at killing glioblastoma stem cells, suggesting that designing drugs to target circadian clock proteins may prove fruitful. Read more.

People with high-grade glioma experience distress and unmet needs, study finds

Patients with high-grade gliomas experience high levels of distress and their needs are not being met, according to a new study published in the journal Psycho-Oncology. The research surveyed 116 people (mean age 55.7 years, 71 percent men) with grade III or IV gliomas at three time points: before chemoradiotherapy, and at three and six months after treatment. Due to deaths and drop-outs, at three and six months, there were 89 and 64 participants respectively. Using a battery of questionnaires, four distress trajectory groups were identified: ranging from those with consistently low distress (18%) to consistent high distress (19%). Distress tended to fall over time in younger participants but remained consistently high in older people. Those who experienced high distress had the most unmet needs, which related to changes in mental ability, physical side effects, changes in appearance, being treated differently by other people, and feeling like a different person. The study’s authors conclude: “Our data demonstrate the urgent need for policy changes to implement regular screening for distress and unmet needs in [high-grade glioma] populations.” Read more (free registration may be required).

Clinical trial results show that bevacizumab plus reirradiation improves progression-free survival in recurrent glioblastoma

According to results of a phase 2 clinical trial (NRG Oncology/RTOG1205) published in the Journal of Clinical Oncology, patients with recurrent glioblastoma lived longer without tumour growth (had an extended progression-free survival) when treated with bevacizumab (Avastin) along with reirradiation (re-RT) compared with treatment with bevacizumab alone. Six-month progression-free survival (PFS) was 54.3% with the combination therapy, compared to 29.1% with bevacizumab alone. The study’s authors note that although there is a clinically meaningful improvement in PFS, there was no improvement in overall survival duration between the two treatment groups (10.1 months vs 9.7 months). Read more.

Study analyses two prognosis scoring systems for low-grade glioma

A study published in Scientific Reports has analysed the consistency between two well-known scoring systems that are used to identify low-grade glioma patients who are at high risk for a poor outcome, and whether these scores reflected patients’ actual outcomes. Records of patients with diffuse low-grade glioma treated at one Spanish institution between 2002 and 2018 were analysed and scored using both the criteria set by the European Organization for Research and Treatment of Cancer (EORTC) and the Radiation Therapy Oncology Group (RTOG). Both were developed before molecular and genetic data were widely used in diagnosis. Analysis revealed a low consistency between them: 51.7% of those assigned to low risk by the EORTC score were classified as high risk according to the RTOG classification, and that only the EORTC model was independently associated with mortality. There is a need to incorporate molecular data alongside clinical features (such as age and tumour size) to improve treatment decisions in low-grade glioma, the researchers conclude. Read more (full article).

MRI scanning technique could detect early whether glioblastoma treatments are working, animal research suggests

A scanning technology called magnetic resonance spectroscopic imaging (MRSI) can be used to observe glioblastoma tumour cell death immediately after treatment, according to the results of experiments on mice with glioblastomas which have been published in Cancer Research. Mice with glioblastoma tumours were treated with chemotherapy and radiotherapy and then scanned using 2H MR spectroscopy alongside an injection of [2,3-2H2]fumarate. In tumour cells that were dying, [2,3-2H2]fumarate was converted into another chemical called [2,3-2H2]malate, which could be detected on imaging. This response could be detected within 48 hours of treatment, suggesting this technique may offer an accurate way to assess treatment effectiveness and so quickly tailor future treatments for patients. Read more (full article).

Study shows childhood radiotherapy involving the head significantly increases risk of meningioma in adult life

Children who have received radiotherapy to their head are at increased risk of developing meningioma brain tumours in later life, according to research published in JAMA Oncology. An analysis of four previously published studies (involving 1011 survivors of childhood cancer) found that those exposed to radiation therapy before age ten years had an increased risk of meningioma, and the risk remained elevated for 30 years. Survivors who had received the highest doses of greater than 24 Gy had a 30-fold increased risk of meningioma compared to those not given radiotherapy. These findings underline the importance of minimising exposure of healthy tissue in children to radiation. Read more.

Study examines genetic variation that increases risk of low-grade glioma

A genetic variation known as rs55705857 – which is a one letter change in a person’s DNA – is known to increase an individual’s risk of developing a low-grade glioma six-fold. In work published in Science, researchers have examined why this genetic variation leads to low-grade gliomas that carry a mutation in the IDH gene (which is a marker of improved outcome). Experiments on cells and mice allowed a research team to document the molecular processes by which rs55705857 causes brain tumours to develop, offering potential targets for future treatments. Read more.

Researchers engineer viruses to better deliver gene therapy into glioblastoma tumours

A team of researchers has genetically engineered a virus to better deliver gene therapy into brain tumours, according to work published in the journal Nature Biomedical Engineering. In a series of cell and animal experiments, they modified a type of virus (adeno-associated virus serotype 9) that is harmless to humans so that it would pass through the blood-brain-barrier and into glioblastoma tumour cells to deliver a genetic payload leading to the tumour cells’ destruction more efficiently than existing adeno-associated viruses. It is hoped that such a gene delivery vehicle could also be used to treat other diseases affecting the central nervous system. Read more.

Study reports encouraging results in clinical trial of continuous convection-enhanced delivery of chemotherapy in recurrent glioblastoma

Results of the first clinical study to trial long-term ‘convection-enhanced delivery’ (CED) of chemotherapy in glioblastoma tumours has been published in the journal The Lancet Oncology. The treatment involves inserting a catheter directly into a tumour, through which chemotherapy is periodically pumped via a device inserted under the skin. Five recurrent glioblastoma patients received four infusions (each separated by five to seven days) after which their tumours were resected. In all five patients, the drug (topotecan) pumped through the catheter significantly reduced proliferating tumour cells. Read more (subscription/payment for full article).

Inner workings of how abnormal ‘smoothened’ protein causes cancer are unpicked, study reports

A study published in Nature Structural & Molecular Biology has unpicked a molecular processes whereby an abnormal version of protein called ‘Smoothened’ on the surface of cells can lead to a variety of cancers, including medulloblastoma. In a news release, study author Benjamin Myers says: “Our findings suggest some new strategies that we might be able to use in the clinic to be able to improve patient outcomes”. Read more.

Most under-18s diagnosed with a brain tumour have ophthalmological abnormalities, study reveals

A study published in JAMA Ophthalmology has shown that children and young people diagnosed with brain tumours often have visual problems or ophthalmological abnormalities.  In this study of 170 Dutch youths (aged 0 to 18 years) with a newly diagnosed brain tumour, abnormal ophthalmological findings were found in 78.8%. Only 40.6% had no vision-related symptoms, with worsened eyesight and double vision the most common. A standardised ophthalmological examination in youths with a newly diagnosed brain tumour should be considered by clinicians, the authors recommend. Read more.

Company news

Research paper examining how Tumor Treating Fields (TTFields) selectively kill cancer cells is published, Novocure announces

Novocure has announced that a review article of anti-cancer mechanisms of action of Tumor Treating Fields (TTFields) has been published in the Journal of Molecular Cell Biology. The article examines the available research and evidence for how the technology, also known as therapeutic alternating electric fields (AEFs), is able to selectively kill cancer cells and impede their proliferation. Read more (company press release).

Artificial intelligence software that tracks high-grade gliomas is approved by US Food and Drug Administration

Computer software that uses artificial intelligence to diagnose high-grade gliomas has been given clearance by the US Food and Drug Administration (FDA) to be marketed in the US, according to an announcement by Neosoma, the company that created the software. The software, called Neosoma HGG, is designed to help clinicians by analysing MRI images to precisely track the progress of high-grade gliomas over time, revealing changes that may not be apparent to the human eye and producing images of the tumour’s precise size and shape (for 3D geometric analysis). Read more (company press releasee)

Kazia Therapeutics announces that its phase 2 trial of paxalisib with ONC201 in diffuse midline gliomas is expanded; two new Australian sites opened

Kazia Therapeutics has announced that its international Phase 2 study investigating the effect of paxalisib on diffuse intrinsic pontine glioma (DIPG) and other diffuse midline gliomas (DMGs), will include two new sites in Australia. Paxalisib (formerly called GDC-0084) inhibits a molecule called PI3K, a critical control mechanism in growth and cell division, which is activated in many forms of cancer. The ongoing clinical trial, also known as PNOC022, (NCT05009992) combines paxalisib with ONC201, an experimental dopamine receptor D2 (DRD2) antagonist manufactured by Chimerix. Read more.

NICO Corporation announces partnership with Kiyatec to improve glioma tissue sample collection and analysis

NICO Corporation and Kiyatec have announced that they have entered into a partnership in glioma patient care to address the well-published unmet clinical need of obtaining better tissue samples and so achieve greater accuracy in predicting tumour response to cancer targeted agents and chemotherapies. This partnership will see Kiyatec's CLIA-certified laboratory receiving brain tumour tissue obtained using NICO's Automated Preservation System (APS), which collects and biologically preserves tissue while the patient is in the operating suite. Read more (company press release).

First patient is enrolled in GESTALT trial of GammaTile® therapy for newly diagnosed glioblastoma, GT Medical Technologies announces

GT Medical Technologies has announced that the first patient has been enrolled in the GESTALT trial of its GammaTile® Surgically Targeted Radiation Therapy (STaRT) for patients with newly diagnosed glioblastoma. GammaTiles are radiation implants that are surgically inserted in the cavity created by tumour removal. The GESTALT Clinical Trial will include immediate radiation with GammaTile Therapy followed by the Stupp protocol (the standard of care for newly-diagnosed glioblastoma). Read more (company press release)

VBI Vaccines and Agenus announce collaboration to evaluate cancer vaccine VBI-1901 in combination with balstilimab (anti-PD-1) in adaptive INSIGhT glioblastoma clinical trial

VBI Vaccines has announced it has entered into a collaboration with Agenus to evaluate the combination of its cancer vaccine VBI-1901 alongside balstilimab, an antibody blocking the PD-1 protein that is designed to boost the immune system, in patients with primary glioblastoma as part of the ongoing adaptive INSIGhT trial (NCT02977780). The randomised, controlled extension study of VBI-1901 in recurrent glioblastoma patients is expected to begin in late 2022, subject to regulatory approvals. Read more (company press release).

Brain tumour community news

Australian Government invests over AUS$5.4 million in three brain tumour research projects

The Australian government has announced that it will invest more than AUS$5.4 million in three brain cancer research projects. The recipients of the research grant include the ‘GLIMMER’ project, a large-scale initiative which will address the lack of effective treatment options for glioblastoma. Other projects include a new targeted combination therapy with matched biomarker to treat glioblastoma, and a CAR-T cell immunotherapy project entitled “Off the Shelf”. Read more.

Report published on how to improve efficiency in cancer care

A paper examining how to prevent and reduce inefficiencies in cancer care, which contribute to worsened patient outcomes and are estimated to cost 20% of all healthcare spending, has been published by All.Can in the Journal of Cancer Policy. The report details the conclusions of a multidisciplinary group of 15 international experts who convened for two rounds of online workshops during 2021, where they scrutinised previous relevant research and devised methods for achieving efficiency gains across the cancer care pathway. The report highlights seven policy recommendations on how to improve efficiency in cancer care throughout the care pathway and how to improve the measurement of efficiency gains. Read more (abstract; full paper available by subscription).

Article examines the costs of avoidable injury from childhood cancer

An article written by experienced paediatric practitioners who have been independent clinical experts providing expert opinion in UK medico-legal proceedings related to childhood cancer cases has been published in Medico-Legal Journal. The report evaluated a series of clinical cases involving a possible breach of duty, which revealed that the most common cause for a legal challenge focused on paediatricians was a delay in diagnosing brain or spinal tumours. Avoiding delay in brain tumour diagnosis has been the subject of health campaigns, such as HeadSmart. ‘Substantial damages’ can be awarded where a breach of duty is identified and avoidable significant brain or neurological injury results in serious consequences for children with long lives. Read more (full article).

Conference, workshop and meeting news

Following the COVID-19 pandemic, we’re slowly getting back to in-person events. However, please ensure that you check with conference organisers as to the status of their scheduled events and whether they are in-person, hybrid or virtual before registering or making travel plans. 

27th Annual Scientific Meeting and Education Day of the Society for Neuro-Oncology (SNO 2022)
16-20 November 2022
Tampa, Florida, USA
The IBTA will be exhibiting at SNO, so if you are attending this conference, please do stop by our booth and say hello.

SIOP Europe 2023 Annual Meeting – Save the date
8-12 May 2023
Valencia, Spain

2023 SNO Pediatric Neuro-Oncology Research Conference
22-24 June 2023
Washington, DC

British Neuro-Oncology Annual Meeting – Save the date
5 – 7 July 2023
Manchester, UK

19th Annual Meeting of Asian Society for Neuro-Oncology (ASNO 2023)
27-29 October 2023
Bali, Indonesia

28th Annual Scientific Meeting and Education Day of the Society for Neuro-Oncology (SNO 2023)
15-19 November 2023
Vancouver, Canada

If you are organising or are aware of a forthcoming patient or brain tumour advocacy event or a scientific conference, whether it is virtual or in-person, taking place in 2022 or 2023 or are aware of any changes to the listings above, then please let us know by emailing so that we can also include new events 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 © 2022 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). Funding organisations which support the IBTA’s work have no influence over the editorial content of this publication, nor any involvement in the preparation, design or production of this publication.

The views and opinions in the materials included in this e-News may not necessarily be those of the International Brain Tumour Alliance.

unsubscribe from this list    update subscription preferences