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IBTA e-News

The monthly bulletin for our
international brain tumour community
September 2021


Leading news

International Brain Tumour Awareness Week is nearly here!

This 2021 International Brain Tumour Awareness Week (Saturday, 30th October 2021 to Saturday 6th November 2021) is almost 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 know how challenging it is to safely organise activities this year because of the continuing COVID-19 pandemic. If restrictions in your country limit safe face-to-face activities, there are still things we can all do to raise awareness of brain tumours. 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 Zoom tea party or quiz with friends and family to raise funds for vital brain tumour research; organise an educational webinar about brain tumours; launch educational resources online; etc. Anything, no matter how small, which you can do to raise awareness of the particular 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.

This year we will be offering an International Brain Tumour Awareness Week toolkit with FAQs and sample social media postings. The toolkit is due to be launched in the second week of October 2021. The social media hashtag for sharing news about events, activities and articles is #IBTAWeek.

If you are able to take part in any kind of activity, we would love to hear about it. We invite you to please register or report your Awareness Week activity through our online form.

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.


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

This inaugural event – “Brilliance!” –  launched on 25th September and aspires to shine a brilliant light on the inspiring creativity and diversity of the international brain tumour community. Patients, family members, friends, researchers and healthcare professionals of every discipline are warmly invited and encouraged to submit their creative work to “Brilliance!”.  Submitted works can include original pieces created especially for this event but may also include original artwork created previously. Participants will not be required to send us the actual creative work, but rather a high-resolution JPEG photograph of it. Accepted submissions will be included in a virtual exhibition catalogue featured on the IBTA website.

To view the complete guidelines and instructions for “Brilliance!”, along with the official submission form, please click on either of the following links:

For online submission: click here.
For email submission: click here (Word document).

More information can be found on the IBTA website here.

The deadline for submissions to "Brilliance!" is 20 October 2021 at 12:00 midnight, UK time.

Treatment news

The importance of shared decision-making in glioblastoma

An article authored by representatives of brain tumour advocacy organisations has highlighted the importance of shared decision-making in glioblastoma care.  Unlike doctor-led decision-making, shared decision-making involves patients, caregivers, and healthcare professionals making decisions together after discussing risks, benefits and alternatives. Drawing on existing research and the findings from a roundtable discussion attended by members of six US-based brain tumour advocacy organisations, the report offers guidance on shared decision-making while stressing the benefits, alongside the challenges, of this approach in glioblastoma patient care. Read more (full article available)

The IBTA has also contributed to an open-access paper on the subject of shared decision-making which has been published in the Journal of Cancer Policy (JCP). This paper helps inform the evidence base for the European Code of Cancer Practice. Additionally, shared decision-making is included as one of the rights in The Brain Tumour Patients’ Charter of Rights.

Research news 

Males with primary glioma have poorer prognosis than females across all ages, study finds

A report published in Neuro-Oncology has examined how age and gender affect  glioma diagnosis and outcome. Analysis of data from the Central Brain Tumor Registry of the United States (CBTRUS) revealed that males were more likely to be diagnosed with a glioma across all age groups and had a worse prognosis than females. Of the females diagnosed with glioma, outcome was worst in ages 0-9 years. The researchers write that these findings should help identify disadvantaged patient groups when developing individual care plans as well as informing directions of future research. Read more.


Nine-drug combination with chemotherapy in recurrent glioblastoma clinical trial

A phase 1b/2a clinical trial published in Neuro-Oncology Advances describes a 9-drug regimen alongside low-dose temozolomide (known as the 'CUSP9v3 treatment protocol') for patients with glioblastoma. Nine different drugs (aprepitant, auranofin, celecoxib, captopril, disulfiram, itraconazole, minocycline, ritonavir, and sertraline), each chosen to block different cancer promoting pathways within glioblastoma, were given alongside temozolomide to ten patients with recurrent glioblastoma. Drugs were added one-by-one and side effects monitored. The researchers noted that in five patients, their tumours progressed rapidly (dying within a range of 1.5–7 months) but that five patients had ‘stable disease’ and were still alive at the time of reporting (29 months). A phase 2 trial is being prepared to further test CUSP9v3. Read more (full article). 


US Survey reveals widespread unmet needs in care for patients with brain metastases

A cross-sectional survey of patients, caregivers and physicians looking at the diagnosis and treatment of brain metastases (cancers that have spread to the brain from elsewhere) has been published in Neuro-Oncology Practice. A total of 237 brain metastasis patients, 209 caregivers, and 239 physicians from across the US were asked about symptoms, concerns, treatment options and more. Results revealed a lack of consistency in treatment options that were offered as well as a pressing need for more clinical trials for patients with brain metastases to access.  Read more. There is further information about this important survey in the latest edition of the IBTA’s Brain Tumour magazine (pages 80-81), which can be read online here.


Clinical study shows targeted drugs are effective in BRAF V600-mutated glial and glioneuronal tumours

A study published in Neurology has found a long-term clinical benefit of using RAF and MEK inhibitors to treat patients with glial and glioneuronal tumours (GGNTs) whose tumour cells have a V600 mutation in the BRAF gene. Examining the outcomes of 28 adult patients with these tumour types, researchers found that 39% of patients’ tumours responded to these drugs, with their tumours reducing in overall size (with an average of 78% reduction in tumour burden). These drugs, which included RAF inhibitors vemurafenib and dabrafenib and MEK inhibitors cobimetinib and trametinib, were linked to longer survival and improved ability to carry out day-to-day activities. Read more (summary).


New molecular classification for meningiomas published

A new classification of meningiomas based on differences between tumours on a molecular level has been published in the journal Nature. The authors of the study propose four meningioma groups: MG1 (immunogenic), MG2 (benign NF2 wild-type), MG3 (hypermetabolic), and MG4 (proliferative), each underpinned by a distinct molecular pathway and with a different clinical prognosis (best with MG1, worst with MG4). Read more (summary).
 

Ivy Brain Tumor Center announces results from two active clinical trials for high-grade glioma

The Ivy Brain Tumor Center at Barrow Neurological Institute in Phoenix, Arizona, US,  recently announced positive initial results from a phase 0/1 clinical trial of  ‘sonodynamic therapy’ (SDT) in patients with recurrent high-grade glioma. The initial results indicate SDT leads to tumour cell death in human glioma tissue, while leaving the normal brain tissue unharmed. Sonodynamic therapy was developed by SonALAsense and involves an infusion of a substance that accumulates in brain tumour cells called Sonala-001 – a special formulation of 5-aminolevulinic acid (5-ALA) – followed by Insightec’s MRI-guided focused ultrasound onto the brain tumour mass, which activates a by-product of Sonala-001 that then destroys the cancer cells. Results were presented at the ESMO Congress on September 20, 2021. Read more
 
Additionally, the Ivy Brain Tumor Center announced results from their Phase 0/1 clinical trial of ribociclib (an RB-CDK4/6 inhibitor) plus everolimus (an mTOR inhibitor) in patients with high-grade glioma. The purpose of the study was to determine the combined effect of these two drug types on recurrent high-grade gliomas, by evaluating how the drug penetrated and interacted with the tumours. Results showed that ribociclib appeared to accumulate within brain tumours to have meaningful effects, warranting further research; but everolimus did not sufficiently penetrate the brain tumours. Results were published in the journal Neuro-Oncology and were presented at the EANO meeting on September 26, 2021. Read more.
 

Australian government opens grant for GBM AGILE research opportunity

The Australian government’s Australian Brain Cancer Mission, in partnership with the Minderoo Foundation and the Cure Brain Cancer Foundation (CBCF) in Australia, has opened a grant opportunity for researchers to undertake the GBM Adaptive Global Innovative Learning Environment (GBM AGILE) trial. Unlike conventional randomised trials which typically randomly group patients into ‘treatment’ and ‘control’ arms, GBM AGILE is a flexible and adaptable trial approach that has several ‘treatment arms’, which patients can move between based on how well a treatment is working, giving the trial the potential to identify or disprove therapies faster. Read more.
 

Study examines how coping style of glioma patients and their caregivers changes over disease progression

Research published in Frontiers in Neurology has examined the coping style of glioma patients and their caregivers. Psychological distress, coping style and quality of life of 24 glioma patients and their caregivers were accessed at time of first treatment (surgery, radiotherapy, chemotherapy) and again at recurrence. Results show that patients and caregivers use varied coping styles but of the five recognised coping styles, most brain tumour patients appear to initially face the disease with either a ‘fighting spirit’ or by a defensive ‘cognitive avoidance’ style.  After recurrence, many patients maintained their fighting spirit but those with ‘cognitive avoidance’ coping strategy often adopted different coping styles including ‘fatalism’. Read more (full paper).


Assessing the impact of brain tumours in Lebanon

A study published in the Cureus Journal of Medical Science has sought to find out how many people in Lebanon are affected by primary brain tumours. Assessment of pathology data collected from an eleven-year period (2007-2017) from four medical centers in Lebanon revealed a total of 695 primary brain tumour cases (61% malignant and 39% non-malignant) across different regions. The authors concluded that Lebanon appears to have a low rate of pituitary tumours but an unusually high percentage of malignant brain tumours, as well as paediatric glioblastomas and meningiomas. Read more (full paper).
 

Study gives quantitative evidence for the change in family function, support and caregiver burden

A study published in the Journal of Family Nursing highlights that brain tumour patients reported that their symptoms had a negative impact on their relationships with other people. The study also acknowledges that physical and emotional symptoms have an important bearing on quality of life in families affected by a brain tumour diagnosis. Read more (abstract only).
 

Study finds protein that drives glioblastoma growth, offering potential drug target

Researchers have identified a protein called galectin1 that helps the growth of glioblastoma cancer stem cells – those cells believed to drive tumour growth – according to a paper published in Cell Reports. Using a series of genetic, molecular, and animal experiments with glioblastoma tumours, the research team showed that a gene within the tumours called LGALS1 produces a protein named galectin1, which binds with another protein, HOXA5. Together this protein combination acted to sustain glioblastoma cancer stem cells and, in animal experiments, was linked to worse prognosis and resistance to radiotherapy. Targeting galectin1 offers a potential target for future treatments, the paper’s authors propose. Read more.


Analysis of forty years of data finds there is a link between farming, pesticide use and brain tumour risk

Over forty years of scientific research investigating the potential impact of pesticide exposure on brain tumour risk shows that there appears to be a link between the two, according to a paper published in the medical journal Cancers. Evaluating and analysing published research from 1997 to 2019 and combining this with two meta-analysis studies from 1998, researchers found that there appears to be a 13% increased risk in diagnosis or death from a malignant brain tumour among farmers, farm managers, agricultural workers, and/or farmers’ spouses. Read more (full paper).


Immunotherapy combination with chemotherapy is effective for patients with brain metastases spread from non-small cell lung cancer, phase 3 clinical trial data shows

Patients with advanced non-small cell lung cancer (NSCLC) who have brain metastases had better outcomes when treated with the immunotherapy agents nivolumab and ipilimumab alongside chemotherapy, compared to those who received chemotherapy alone, according to an analysis of a randomised phase 3 clinical trial (called CheckMate 9LA). Results published in The Lancet Oncology showed that patients taking combination immunotherapy with chemotherapy lived longer - an average of 10.4 months before recurrence (progression-free survival), whereas in those who received only chemotherapy alone, this was 4.1 months. Read more (free registration may be required).


Study finds first symptoms of cognitive impairments predict shorter survival in glioblastoma yet this is often missed in primary care

Glioblastoma patients who have impaired mental abilities when diagnosed tend to have larger tumours and reduced survival, according to a paper published in Acta Neurologica Scandinavica. Researchers examined the medical records of 189 glioblastoma patients in Sweden to analyse initial symptom/s, diagnostic scans, and survival. Tumour size, location and treatment data for each patient was also assessed. Cognitive problems, such as disorientation/confusion, memory issues or odd behaviour/changed personality, were more common as first symptoms in older patients yet were often missed in primary care. These features were also linked to poorer outcomes as well as delayed diagnosis. Headaches, fatigue and dizziness as first symptoms were not linked to overall survival, while epileptic seizures as the first symptom was associated with longer survival and smaller tumours. Read more (full paper).


New research project to target childhood medulloblastoma announced

It has been announced that a new research programme, funded by the UK-based charities Children with Cancer UK, Blue Skye Thinking and Little Hero, will aim to develop better and more effective treatments for childhood medulloblastoma, which is the most common paediatric high-grade brain tumour. The research project, named INSTINCT-MB, and led from Newcastle University, UK, will aim to develop new treatments for Group 3 medulloblastoma through the use of new drugs and CAR-T cell therapies (a type of immunotherapy that ‘trains’ an individual’s immune system to attack their tumour). Read more.

International brain tumour community news

Danish brain tumour society releases series of short videos on life with a brain tumour

HjernetumorForeningen – the Danish brain tumour society – has produced nine short Danish-language videos about being diagnosed with, and living with, a brain tumour. Tracing the story of a woman who has a brain tumour, it is hoped that the films will help family, friends and professionals to better understand what it is like to live with a brain tumour.  The films were produced in close co-operation with patients, relatives, health care professionals and the acting school Ophelia. The project was financed by The Danish Brain Tumor Association, The A. P. Møller Support Fund, The Danish Cancer Society and The Danish Ministry of Health. Read more and watch online here (Danish).

Company news

iCAD announces results in trial of its Xoft intraoperative radiation therapy

iCAD has announced  results from a prospective two center comparative study evaluating its Xoft® Axxent® Electronic Brachytherapy (eBx®) System® in treating recurrent glioblastoma. The study involved 15 patients with recurrent glioblastoma who were treated with maximal safe resection and Xoft intraoperative radiation therapy (IORT) and 15 patients treated with maximal safe resection and other modalities (control group). The company said that patients treated with Xoft Brain IORT lived for a range of four to 54 months after treatment without recurrence, whereas patients in the control group had a recurrence within two to ten months and lived for a range of two to 22.5 months after treatment. Results were presented at the American Association of Neurological Surgeons (AANS) 2021 annual scientific meeting held virtually on August 21-25. Read more (company press release).


Lantern Pharma’s LP-184 granted orphan drug designation by US FDA for treating glioblastoma and other malignant gliomas

Lantern Pharma has announced that the US Food and Drug Administration (FDA) has granted orphan drug designation to its drug LP-184 for treating glioblastoma and other malignant gliomas. LP-184 was developed to damage DNA in tumour cells that overexpress specific biomarkers or that carry mutations in DNA repair pathways. Orphan drug designation grants various benefits to help speed the development of a treatment for rare diseases, including seven years of market exclusivity (protection from competitors producing an equivalent ‘generic’ drug) if approved. Read more (company press release).

Conference, workshop and meeting news

The Society for Neuro-Oncology Sub-Saharan Africa launches ‘First Thursday’ monthly interactive webinars

The Society for Neuro-Oncology Sub-Saharan Africa (SNOSSA) has launched a series of monthly interactive webinars looking at various aspects of neuro-oncology (including neurosurgery, clinical and paediatric neuro-oncology, pathology, neuroradiology, supportive care and patient advocacy), presented by speakers and professionals from across the globe. Held on the first Thursday of each month, the next webinar will be held on 7th October and will be hosted by Professor Alan Davidson on the topic of paediatric brain tumours. Further details are available on the SNOSSA website here.
 

“Coalition Connection 2” online event

The Global Cancer Coalitions Network (GCCN) of which the IBTA is a founding member, has announced a free online event on “COVID-19 Vaccines and Cancer”.  The event will present the perspectives of an immunologist, haematologist, oncologist, and psychologist. Examples of good practice from GCCN members around the world will also be included in this interactive event which takes place on Wednesday, 13 October, 2021 at 11:00 am UTC.  Register for this free event at bit.ly/GCCNEvent.


Children’s Brain Tumour Drug Delivery Consortium – next workshop announced

The Children’s Brain Tumour Drug Delivery Consortium (CBTDDC) is running their next workshop on 8-9th November. Focusing on tackling the main challenges in preclinical to clinical translation of paediatric CNS drug delivery devices, this will take place in Nottingham UK, but will also have virtual places for individuals who can’t attend in-person because of Covid-19 restrictions. More details, including the speaker programme, can be found here.


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.

PATIENT AND STAKEHOLDER CONFERENCES AND EVENTS 2021

October
Brain Tumour Foundation of Canada Webinar Series
In search of new treatment strategies for medulloblastoma: a story about subgroups, selumetinib and serendipity
5 October 2021
Online

UCSF Neuro-Oncology Supportive Care Services 
Spirituality and Brain Cancer: Finding Healing and Meaning in the Journey
20 October 2021
Online
 
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

ISPNO 2020 Family Day
30 October 2021
Online

International Brain Tumour Awareness Week
30 October – 6 November 2021

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

October
SNO 1st Annual Conference on CNS Clinical Trials
1-2 October 2021
Online

SNOSSA First Thursday Education Series Webinar – “Paediatric Brain Tumours”
7 October 2021
Online

Congress of Neurological Surgeons (CNS) 2021 Annual Meeting
16-20 October 2021
Austin, Texas, USA

34th Annual Congress of the European Association of Nuclear Medicine (EANM)
20-23 October 2021
Online

2021 Congress of the International Society of Paediatric Oncology (SIOP)
21-24 October 2021
Online

2021 Congress of the European Association of Neuro-Oncology (EANO) Educational Day
23 October 2021
Online

13th Annual Scientific Meeting of the Co-operative Trials Group for Neuro-Oncology (COGNO)
24–26 October 2021
Online

November
European Cancer Summit (hybrid event)
17-18 November 2021
Brussels, Belgium and Online

2nd Pakistan Paediatric Neuro-Oncology Symposium (PNOS2)
12-13 November 2021
Online

SNO 2021 Annual Meeting and Education Day
18-21 November 2021
Boston, Massachusetts, USA

December
Flash Radiotherapy and Particle Therapy Conference
1-3 December 2021
Vienna, Austria and Online

39th Annual Meeting of the Japan Society for Neuro-Oncology
5-7 December 2021
Kobe, Japan

SNO Maximal Safe Brain Tumor Resection: Intraoperative Visualization and the Connectome Conference
6-7 December 2021
Online

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

May
SNOG-FiBTRA Symposium 2022
Joint Symposium of the Scandinavian Society of Neuro-Oncology and the Finnish Brain Tumor Research Association
19-21 May 2022
Tampere, Finland

June
SIOP Europe Brain Tumor Group Meeting
11-12 June 2022
Hamburg, Germany

20th International Symposium on Paediatric Neuro-Oncology (ISPNO 2022)
13-15 June 2022
Hamburg, Germany

15th International Stereotactic Radiosurgery Society Congress
19-23 June 2022
Milan, Italy

Brain Tumors Meeting 2022 – From Biology to Therapy
22-24 June 2022
Warsaw, Poland

September
Posterior Fossa Society – First Global Meeting
9-11 September 2022
Liverpool, UK

16th Congress of the European Association of Neuro-Oncology (EANO)
15-18 September 2022
Vienna, Austria

November
27th Annual Scientific Meeting of the Society for Neuro-Oncology (SNO 2022)
16-20 November 2022
Tampa, Florida, USA

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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ABOUT THE IBTA


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 www.theibta.org.  

 

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: 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.
Copyright © 2021 The International Brain Tumour Alliance, All rights reserved.

Disclaimer

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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