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Leading news
New paper on the global impact of the COVID-19 pandemic on neuro-oncology practice
A research paper entitled: "The State of Neuro-Oncology During the COVID-19 Pandemic: A Worldwide Assessment" has been published in manuscript form in the journal Neuro-Oncology Advances. Drawing on results from a survey developed by the SNO (Society for Neuro-Oncology) COVID-19 Task Force, of which the IBTA is a member, the survey was completed by practitioners, scientists, and trainees from 21 neuro-oncology organisations across six continents between April and May 2020. The survey highlights, among other findings, that COVID-19 “has changed treatment schedules and limited investigational treatment options” and that “institutional lack of support created clinician and researcher anxiety.” The article is available in full here.
Launch of SISAQOL-IMI: Setting international standards in analysing patient-reported outcomes and QOL endpoints
An international multidisciplinary consortium, co-led by the European Organisation for Research and Treatment of Cancer (EORTC) and Boehringer Ingelheim (BI), has been convened to generate recommendations to standardise the use, analysis, and interpretation of patient reported outcome (PRO) data in cancer clinical trials.
SISAQOL-IMI (Setting International Standards of Patient-Reported Outcomes and Quality of Life Endpoints in Cancer Clinical Trials - Innovative Medicines Initiative), of which the IBTA is one of the project’s member organisations representing the cancer patient perspective, will establish guidance on how to use patient-reported outcomes in cancer clinical trials so that they can be used in a methodologically sound way, analysed in a statistically adequate manner, and intelligibly presented to ensure a high study quality and a better comparability of results across clinical trials. Read more.
March is Brain Tumour Awareness Month in the UK
March 1st marks the start of Brain Tumour Awareness Month in the United Kingdom, which sees brain tumour organisations in the UK run a variety of public engagement events and fundraising activities. Search ‘Brain Tumour Awareness Month UK’ or contact your local UK brain tumour organisation to find out more.
Brain Tumours and COVID-19: the patient and caregiver experience
Toronto-based neurosurgery resident Dr. Mathew Voisin, lead author of "Brain tumours and COVID-19: the patient and caregiver experience", which was recently published in Neuro-Oncology Advances, presented the paper at the annual University of Toronto Global Health Research Showcase (event programme available here) on 4th February (World Cancer Day). The survey, in seven languages, was carried out by the IBTA in collaboration with the Society for Neuro-Oncology (SNO) COVID-19 Task Force and the University of Toronto. The paper in Neuro-Oncology Advances reporting the survey results is freely available here.
Global Cancer Coalitions Network holds successful Coalition Connection event on COVID-19
On 4th February 2021, the Global Cancer Coalitions Network (GCCN) held its first Coalition Connection event. Coinciding with World Cancer Day, this interactive session explored the effects that the COVID-19 pandemic has had on the global cancer community. The virtual event featured a combination of panel discussions and keynote speakers, including Anita Granero, one of the IBTA’s Senior Advisors and founder and President of Oscar’s Angels, one of the IBTA’s supporting organisations. The event saw the release of the report: COVID-19: Impact on Cancer Patient Organisations Worldwide in 2020, which also includes results from the IBTA’s international survey: ‘The brain tumour not-for-profit and charity experience of COVID-19: reacting and adjusting to an unprecedented global pandemic in the 21st century’. Formed in the wake of COVID-19, the GCCN is a collaboration of nine global cancer coalitions and alliances (including the IBTA), representing 750 patient organisations working on behalf of 14 million cancer patients around the world. Read more (with link to video of the event).
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Treatment news
Brain tumour ‘dye’ Gleolan launched commercially in Canada, Medexus Pharmaceuticals announces
Medexus Pharmaceuticals has announced that it has begun the commercial launch of Gleolan, also known as 5-aminolevulinic acid hydrochloride or 5-ALA, in Canada for surgery in patients with Grades III or IV gliomas. Gleolan is a ‘dye’ that is selectively taken up by brain tumour cells, causing cancer cells to fluoresce under blue light, thus helping neurosurgeons to better visualise these gliomas for more complete removal. Gleolan had previously only been distributed under the Health Canada Special Access Program. Read more (company press release).
A Position Statement on the Utility of Interval Imaging in Standard of Care Brain Tumour Management
A UK position statement published in Frontiers in Oncology aims to “provide a framework for developing the evidence base for the value of interval imaging in primary brain tumours and, thereafter, practice recommendations”. The paper represents the findings of a large collaboration of UK experts and stakeholders, which includes clinicians, data scientists, health economists, and patient representatives. The paper discusses the value of interval imaging, and the balance of the distress for some patients and their caregivers that it causes, against the potential benefits it can bring to treating the disease, while highlighting various ways that researchers can gather evidence to improve scanning routines so that they are most effective and do not interfere with patient quality of life. Read more.
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Research news
Phase 3 ‘Trident’ trial of Optune in newly diagnosed glioblastoma continues to recruit patients across the US
A clinical trial called TRIDENT (or “EF-32”) which is testing the Tumor Treating Fields (TTFields) device Optune in newly diagnosed glioblastoma patients, is continuing to recruit patients. Novocure, the developer of Optune, plans for 950 people to take part in the trial from across the world and enrolment is open in multiple centers in the US, Canada, Japan, and across Europe. Find out more about TRIDENT here (Novocure website) and here (clinicaltrials.gov).
Study finds that antipsychotic drug combined with statin boosts glioblastoma survival in animals treated with radiotherapy
A lab study has found that mice with glioblastoma treated with radiotherapy live four times as long when given a combination of atorvastatin, a drug used to treat high cholesterol, and quetiapine, an anti-psychotic medicine that blocks dopamine receptors in the brain. Published in the Journal of the National Cancer Institute, this research showed how quetiapine slowed glioma cells’ ability to regenerate, making them susceptible to radiation while also altering their internal cholesterol synthesis pathways, and so also making them vulnerable to simultaneous treatment with atorvastatin. Read more.
Synthetic female sex hormone linked to meningioma in women, published paper reports
Cyproterone acetate (CPA), a drug that mimics the effect of the female sex hormone progesterone and is used in hormone therapy for a variety of conditions, has been linked to an increased risk of meningioma in women, according to a study published in the British Medical Journal. Previous research has found a link with CPA and meningioma in men, but this new analysis of data from SNDS (the French administrative healthcare database) between 2007 and 2015, found a statistical link in women, with higher doses of CPA resulting in a higher risk of meningioma: a cumulative dose of more than 60 g of CPA -- the highest exposure group in this study -- showed a nearly 22-fold increased risk. Read more.
Detailed molecular and genetic mapping reveals four glioblastoma subtypes
A team of more than 40 investigators has used a suite of advanced molecular technologies to create a detailed profile of the cells, genes, proteins and internal signalling pathways within glioblastoma tumours. With this ‘multinomics’ approach researchers analysed 99 glioblastoma tumour samples from patients who had not yet received treatment to discover that each glioblastoma tumour fell into one of four subtypes, each distinguished by the type of immune cells that were within the tumour tissue. Published in the journal Cancer Cell, it is hoped that these insights will help inform future clinical trials as well as direct research into future targeted therapies. Read more.
Aggregated bundles of protein waste inside cells may predict aggressiveness of paediatric choroid plexus brain tumours, study says
Clumps of misfolded and damaged proteins inside cells, known as ‘aggresomes', appear to be involved in the development of paediatric choroid plexus tumours, according to findings from a study published in the Journal of Neuro-Oncology. Serving to bundle up malformed proteins when a cell’s repair and waste removal systems are overwhelmed, aggresomes were more numerous in more aggressive tumours, and higher numbers were linked to poorer prognosis. As well as offering clues into the cause of these tumours, aggresomes could be used as a prognostic marker, the study’s authors conclude. Read more.
Animal study reports enzyme inhibiting drug extends glioblastoma survival
Published in Nature Communications, a lab based study has found that drugs designed to inhibit an enzyme called PRMT5 can cause glioblastoma ‘stem cells’ (those cells believed to drive a tumour’s overall growth) to age and die, subverting their ability to divide indefinitely. Testing one of these PRMT5-inhibiting drugs that crosses the blood-brain barrier (named LLY-283) in mice with glioblastoma tumours grown from patient glioblastoma cells, the researchers were able to show that LLY-283 was active against the tumour and led to the animals surviving longer (37 days vs 30 days). Read more.
New immunotherapy target discovered for gliomas, study reports
According to a study in the journal Cell, researchers have uncovered a way in which glioblastoma tumours suppress the body’s immune system, opening the door to new immunotherapy treatments. Through molecular analysis of T cells (a class of immune cells) within glioma tumours, they found that glioma cells have a protein on their surface, called CLEC2D, which dials down T cells’ cancer fighting abilities by activating a receptor molecule on the surface of T cells called CD161. In a series of experiments, the research team showed that by blocking CD161, T cells were better able to attack glioma cells, leading to their destruction. These results suggest that antibodies to block CD161 might serve as a potential future immunotherapy. Read more.
Artificial intelligence and diffusion-weighted MRI can reliably distinguish difficult-to-diagnose paediatric brain tumours research highlights
According to a study in Scientific Reports, artificial intelligence algorithms trained to interpret diffusion-weighted imaging – a type of MRI scan that measures the dispersion of water molecules – can be used to reliably categorise different types of paediatric brain tumours in the pituitary fossa (the small cavity on the underside of the brain, housing the pituitary gland), something that is challenging to achieve using existing imaging techniques assessed by radiologists due to visual similarities. By testing a machine learning algorithm (a type of artificial intelligence) on imaging data from 124 paediatric patients with posterior fossa tumours from across 12 different hospitals in the UK, the research team was able to demonstrate a high degree of accuracy in distinguishing three types of paediatric brain tumour (ependymoma, medulloblastoma and pilocytic astrocytoma). Read more.
High resolution three-dimensional biopsy of glioblastoma offers insights in microscopic detail
Researchers have used new 3D microscope technologies to produce highly accurate visualisations of a glioblastoma tumour on a cellular level, including three dimensional views on the complex network of blood vessels which supply the tumour. The study, published in the journal Acta Neuropathologica Communications, gives high resolution maps of the structural layers of the blood-brain barrier as well as the positions and movement of immune cells as they pass through the blood-brain barrier and into the tumour mass. It is hoped that this open-access resource of images will help advance the research community’s understanding of glioblastoma and help direct future immunotherapy treatment strategies. Read more.
Research suggests zebrafish may offer a new way to study and understand glioma growth
According to a series of experiments published in ACS Pharmacology & Translational Science, using zebrafish (a freshwater fish belonging to the minnow family) may offer an alternative to rodents for studying how glioma brain tumours grow in the brain and track along blood vessels to spread throughout the brain. Zebrafish demonstrate many biological crossovers with mammals, are faster to grow and reproduce, and have transparent scales making brain tumour growth easier to see under a microscope so brain tumours can be observed growing in real-time. Read more.
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Company news
MGC Pharmaceuticals to explore nanotechnology in cannabinoid glioblastoma research
MGC Pharmaceuticals has announced that its ongoing pre-clinical research programme into the use of cannabinoids (substances found in cannabis) to treat glioblastoma has been expanded to explore the use of nanotechnology to find the most effective treatment delivery systems. This is to build on the company’s previous work, published in November 2020, whose findings included demonstrating the ability for the cannabinoid CBG to destroy therapy-resistant glioblastoma cells as well as impair the major hallmarks of glioblastoma progression, i.e. fast proliferation and invasion, and particularly enhancing glioblastoma cell death. According to a company press release, the aim of this lab-based research is to test new ‘nano emulsifying’ formulations on human tissue before starting animal-based experiments. Read more (company press release).
Positive preclinical results for Aminex Therapeutics’ AMXT 1501 combination therapy in paediatric diffuse intrinsic pontine gliomas (DIPG)
Aminex Therapeutics has announced that positive results for its drug AMXT 1501 for the treatment of childhood diffuse intrinsic pontine gliomas (DIPG) – a brain tumour type with a very poor prognosis - have been published in the journal Nature Communications. When combined with the drug difluoromethylornithine (DFMO, also known as eflornithine), tumour cells’ ability to produce polyamines – substances needed for DNA replication – were dramatically reduced, resulting in less cell proliferation. In mice with DIPG tumours that were treated with this combination therapy, survival was markedly improved, with two thirds outliving the experiment by surviving for over 160 days. Read more (company press release)
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International brain tumour community news
Less Survivable Cancer Taskforce survey finds poor awareness of cancer symptoms, fewer people seeking medical help during the pandemic
The UK-based Less Survivable Cancer Taskforce (LSCT) – a charity collaboration representing the six poorest prognosis cancers: lung, liver, brain, oesophageal, pancreatic and stomach – has published results from a survey which shows that awareness of the symptoms of these deadliest cancers is as low as 4% in the UK. Furthermore, the percentage of people in the UK who would seek medical help for symptoms of a less survivable cancer has dropped from 69% to 59% because of COVID-19. Read more.
Healthcare professionals asked to complete online survey on brain tumour patient reported outcomes
The Response Assessment in Neuro-Oncology-Patient-Reported Outcome (RANO-PRO) working group – an international multidisciplinary collaboration that provides guidance on the use of patient-reported outcome (PRO) measures in clinical trials and practice for adult patients with brain tumours – is inviting all healthcare professionals involved in the care of brain tumour patients to participate in a 10-20 minute online survey. With this international survey, the RANO-PRO working group aims to identify which aspects of functioning are important for brain tumour patients and so determine the content validity of PRO measures that are currently used in brain tumour research. Three sources of information will be used to identify the most important aspects: patients, their informal caregivers and healthcare professionals. Patients and their caregivers are currently recruited for participation through outpatient clinics worldwide. Healthcare professionals who treat at least 20 patients with brain tumours each year and have at least two years of experience are invited to take part in the survey here.
Call for survey on parents' attitudes to post mortem paediatric brain tumour tissue donation
The Swifty Foundation together with the Children’s Brain Tumor Network are conducting a survey on parents’ attitudes towards post mortem tissue donation in children with central nervous system tumours, whether parents chose post-mortem tissue donation or not. The data from the survey will be used to inform a consensus paper on the subject. The survey is aimed towards any family which has lost a child to brain cancer. The Swifty Foundation and Children’s Brain Tumor Network are working with “Gift from a Child” (GFAC), a paediatric post-mortem brain tissue donation program. The survey link is here. The deadline for completing the survey is 30th March 2021.
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Event news
Due to the current COVID-19 pandemic, many in-person meetings and conferences around the world have been cancelled, postponed, or converted to virtual events. We are trying our best to keep up with this news but please make sure you check with conference organisers as to the status of their scheduled events.
Congress of the European Association of Neuro-Oncology (EANO) to be held virtually this year
The EANO Board has announced that the EANO 2021 Meeting on 23-26 September 2021 will now be held as a virtual eEANO Meeting. Abstracts are now being accepted here. EANO will also be expanding its continuous online educational and scientific offerings, and their eEANO Webinars are now available to the entire neuro-oncology community, no longer requiring EANO membership to attend. The next eEANO webinar is included in the events listings below.
PATIENT AND STAKEHOLDER CONFERENCES AND EVENTS 2021
March
UK Brain Tumour Awareness Month
See websites of UK brain tumour organisations for further details
Newly Diagnosed: Empowering Your Journey (American Brain Tumor Association webinar)
20 March 2021
Online
Brain Tumour Foundation of Canada Webinar Series
Brain tumour treatment side-effects: a holistic approach to management
30 March 2021
April
Brain Tumour Foundation of Canada Webinar Series
Training the Next Generation of Neurosurgeon-Scientists: Fighting Brain Tumours in Two Worlds
20 April 2021
Online
Webinar: Clinical Trials – Paving the Way Forward (American Brain Tumor Association)
28 April 2021
Online
May
US/Canada/Australia/New Zealand National Brain Tumour Awareness Month
See websites of US, Canadian, Australian and New Zealand brain tumour organisations for further details.
BT5K Your Way: a virtual 5K (American Brain Tumor Association)
22 May 2021
Register your event online
Brain Tumour Foundation of Canada Webinar Series
Psychosocial Screening in Pediatric Brain Tumour Care
25 May 2021
Online
Webinar: Neuropsychiatric Symptoms & How to Manage Them (American Brain Tumor Association)
26 May 2021
Online
June
Brain Tumour Foundation of Canada Webinar Series
It’s All About Being Adaptive! Rehabilitation When You Have a Brain Tumour
22 June 2021
Online
September
Brain Tumour Foundation of Canada Webinar Series
Navigating the Twists and Turns of Survivorship: School and Work Considerations for Youth and Young Adults
21 September 2021
Online
October
Brain Tumour Foundation of Canada Webinar Series
Changing the Caregiver Experience: Ways to Take Charge and Support Yourself and Your Loved One Living with a Brain Tumour
26 October 2021
Online
15th International Brain Tumour Awareness Week
30 October – 6 November 2021
Global
November
Brain Tumour Foundation of Canada Webinar Series
Genomic and Molecular Markers in Glioma: Where Are We Now?
23 November 2021
Online
SCIENTIFIC CONFERENCES
2021
March
Webinar: Dissecting the aetiology of glioblastoma (organised by The Brain Tumour Charity)
3 March 2021
Online
1st Annual UCSF Brain Tumor Center Update Symposium
5 March 2021
Webinar
EANO webinar: Characterization of glioblastoma initiating cells and their impact on tumor heterogeneity and disease progression
31 March 2021
Online
April
SNO/NCI Joint Symposium: Targeting CNS Tumor Metabolism
6-7 April 2021
Webinar
May
6th Quadrennial Meeting of the World Federation of Neuro-Oncology Societies (WFNOS) and 17th Meeting of the Asian Society for Neuro-Oncology (ASNO)
6-9 May 2021 Now postponed to 24-27 March 2022
Seoul, South Korea
Cancer Research UK Cambridge Centre Neuro-oncology Conference 2021
18-19 May 2021 (was 19-20 April 2021)
Cambridge, United Kingdom Now a virtual meeting
June
2021 SNO Pediatric Conference – 6th Biennial Pediatric Neuro-Oncology Basic and Translational Research Conference
10-12 June 2021
Washington, D.C., USA
Posterior Fossa Society – First Global Meeting
11-13 June 2021 Postponed to September 2022. Details to be announced on website.
Liverpool, UK
Brain Tumors Meeting 2021
21-23 June 2021
Warsaw, Poland
July
British Neuro-Oncology Society Annual Meeting (BNOS 2021)
8-9 July 2021
Online
September
2021 Congress of the European Association of Neuro-Oncology (EANO)
23-26 September 2021
Rotterdam, The Netherlands
Now virtual
October
13th Annual Scientific Meeting of the Co-operative Trials Group for Neuro-Oncology (COGNO)
24–26 October 2021
Melbourne, Australia
November
Annual Scientific Meeting of the Society for Neuro-Oncology (SNO 2021)
18-21 November 2021
Boston, Massachusetts, USA
2022
March
6th Quadrennial Meeting of the World Federation of Neuro-Oncology Societies (WFNOS) and 17th Meeting of the Asian Society for Neuro-Oncology (ASNO)
24-27 March 2022
Seoul, South Korea
September
Posterior Fossa Society – First Global Meeting
September 2022 – dates to be confirmed Please check website for confirmation of new 2022 dates.
Liverpool, UK
16th Congress of the European Association of Neuro-Oncology (EANO)
15-18 September 2022
Vienna, Austria
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 2021 or 2022 or are aware of any changes to the listings above, then please let us know by emailing kathy@theibta.org 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.
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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 www.theibta.org.
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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: kathy@theibta.org.
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.
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