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 September 2018 on Facebook
Google Plus One Button

IBTA e-News

The monthly bulletin for our
international brain tumour community

September 2018

Leading News

International Brain Tumour Awareness Week is next month: 20 – 27th October 2018

The IBTA-initiated International Brain Tumour Awareness Week is fast approaching and will be running from 20-27th October 2018. It is a fantastic opportunity for anyone in the international brain tumour community to organise and/or take part in awareness-raising activities to highlight the various issues surrounding brain tumour treatment, care and support. Past years’ activities have ranged from informal tea parties and support meetings to large scale conferences and fund-raising efforts. We hope that you will support this important week in the neuro-oncology calendar and please let us know about your planned activities. Contact the IBTA at if you have any questions about setting up an awareness-raising activity.

NCI-CONNECT website launched

The US National Cancer Institute (NCI) has announced the launch of the NCI-CONNECT Rare Brain and Spine Tumor Network website. The initiative aims to build partnerships to help patients with rare brain and spinal tumours. The new website includes resources for patients, advocates and practitioners, including a survey for patients and opportunities for non-profit organisations to partner with NCI-CONNECT. Visit the new website at, which includes clinical trial information (click here).

Glioma survey - calling patients and brain tumour support charities and non-profits

Hanneke Zwinkels and Prof Dr. Martin Taphoorn, who are researchers from The Netherlands, would like to invite all glioma (grades 2, 3 and 4) patients, their caregivers, and former caregivers to take part in their research to determine a better description and characterisation of changed personality and behaviour in glioma patients. This research will ultimately lead to better identification of changed personality and behaviour, and improved patient care. The survey takes approximately 20-30 minutes to complete and the deadline for responses is 30 October 2018.  Brain tumour support charities and non-profits, please spread the word in your communities about this important survey. We also ask healthcare professionals to kindly help reach as many glioma cases as possible by sharing the survey with your patients. To take part in the survey click here.

Two papers consider the future of patient-reported outcomes in clinical trials

A report published in the journal Clinical Trials and a systematic review in The Lancet Oncology have established the need for improved consistency and standardisation in measuring patient-recorded outcomes (such as quality of life assessments) in cancer clinical trials, including those of brain tumour interventions. Both papers represent the work of the Setting International Standards in Analysing Patient-Reported Outcomes and Quality of Life Endpoints Data Consortium (SISAQOL), which is a multi-stakeholder initiative that was convened by the EORTC (European Organisation for Research and Treatment of Cancer) in 2016 and in which the IBTA is involved as a patient group representative.  The IBTA’s Chair, Kathy Oliver, is one of the co-authors of these two papers.

Research roundup

T cells engineered to home in on brain cancer, study reports

Researchers have successfully engineered T-cells (a type of immune cell) that will pass through the blood-brain barrier and also target glioblastoma tumour cells, leading to tumour destruction, according to the findings of a paper published in Nature. Experiments on mice showed the treatment was effective and it is hoped the technique will help inform future human therapies. Read more.

Pediatric Brain Tumor Atlas now available to access online via Kid’s First Data Resource Portal

The Children’s Brain Tumor Tissue Consortium (CBTTC) has announced the launch of the Pediatric Brain Tumor Atlas, a dataset of more than 2,500 childhood brain tumour samples. The repository – which will continue to grow as new data is generated – will be available to researchers via the newly-developed Kids First Data Resource Portal, an open-access, collaborative and cloud-based environment. Read more.

Lab experiments suggest it may be possible to turn off glioblastoma’s ‘immortality switch’

It may be possible to create a drug to turn off the ‘immortality switch’ in glioblastoma cells without harming healthy cells, according to findings published in the journal Cancer Cell. Experiments on animals and cells from human patient tumour samples revealed that a small segment of the common protein GABP was crucial to allowing glioblastoma cells to multiply indefinitely. Using CRISPR gene-editing technology, researchers showed that removing this protein element (GABPbeta1L) reduced glioblastoma growth, suggesting it as a target for future glioblastoma therapies. Read more.

Results from a phase 2 trial of iniparib in newly diagnosed glioblastoma published

In patients with newly diagnosed glioblastoma, the experimental drug iniparib with concurrent radiotherapy and temozolomide has shown anticancer activity and an encouraging safety profile, according to phase 2 clinical trial findings published in Clinical Cancer Research. Results from 81 patients with newly diagnosed glioblastoma showed 2- and 3-year survival rates of 38% and 25%, respectively, which compared favourably with historical controls. Read more (full paper requires subscription).

Animal study shows that ‘intracavity stem cell therapy’ may be effective in extending medulloblastoma survival

In a series of animal and cell-based studies published in PLOS ONE, researchers reported that intra-cavity stem cell therapy was effective in slowing medulloblastoma growth and extending survival. The therapy involved the creation of “neural killer cells” (cytotoxic neural stem cells) from paediatric patient skin, which were engineered to produce substances toxic to tumour cells. When introduced into the tumour site, the stem cell therapy prolonged animal survival by 133 percent.  Read more.

Study finds that circadian rhythm gene may be pivotal in glioblastoma survival

An open-access paper published in Scientific Reports has found that a gene typically associated with human circadian rhythm appears to help glioblastoma tumours survive. Cell and animal-based experiments revealed that when an enzyme (casein kinase 1 epsilon) that is produced by a member of the casein kinase 1 gene family is blocked with a drug, the proliferation of glioblastoma stem cells stops and tumour formation is inhibited. Read more.

Study identifies age-specific genetic risk factors for glioblastoma

A study published in the International Journal of Cancer has found significant differences in the genetic risk factor associated with glioblastoma between young and old patients. Analysis of the entire genome of 4,512 individuals with glioblastoma and 10,582 controls revealed that younger individuals with glioblastoma (ages 18-53) carried genetic risk factors that were previously associated with lower-grade glioma diagnosis. Such age-specific differences may provide important clues to the origin of these tumours, the paper reports. Read more (abstract only).

An additional inhibitor could make drugs that target VEGF more effective in treating glioblastoma, research suggests

Findings from a study published in Nature Communications suggests that drugs that target vascular endothelial growth factor (VEGF), such as the anti-angiogenic agent bevacizumab, could be made more effective by combining them with an agent that inhibits the PDGF (platelet-derived growth factor) pathway. In a series of lab-based studies, the researchers found that the PDGF pathway, which regulates cell growth and division, was instrumental in glioblastoma tumours being able to resist anti-angiogenic therapy. Read more.

Laser therapy for glioblastoma is “safe and effective in properly selected patients”, study concludes

A study has analysed the outcomes of all laser therapies for glioblastoma from 2010 to 2016 at Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine in the USA. According to the study, the treatment – MRI-guided Laser Interstitial Thermal Therapy (LITT) – was administered to 55 glioblastoma patients over 5.5 years and was found to be well-tolerated and safe. Results published in Neurosurgery showed that the addition of laser therapy at time of glioblastoma recurrence resulted in an overall survival of 11.8 months, which is 2 months longer than historical controls. Read more.

Treatment news

More opticians to be allowed to fast-track people with suspected brain tumours under UK NHS plans 

According to media reports, the UK National Health Service (NHS) has announced plans for more opticians to directly refer patients suspected of a having a brain tumour directly to specialist care, rather than asking them to see their GP (family doctor) first. The new scheme is being expanded across North East England following the success of the South Tees Optical Referral Project (STORP), which saw 32 patients referred and two brain tumours found. Read more (free registration required).

Company News

Telix Pharmaceuticals receives ethics approval to commence study of TLX101 in glioblastoma

Telix Pharmaceuticals has announced that they have received ethics approval to commence a phase 1/2 study for the use of TLX101 in conjunction with radiotherapy to treat recurrent glioblastoma. 131I-TX101 is a small molecule (synthetic amino acid) that targets L-Type amino acid transport 1 (LAT-1), to deliver a payload that enhances the effect of external beam radiation therapy. Read more (company press release).

First brain tumour patient receives Moleculin’s WP1066 in phase 1 clinical trial

The first patient has received the initial doses of WP1066 in a phase 1 clinical trial of patients with recurrent malignant glioma (glioblastoma, anaplastic glioma), and melanoma patients with progressive brain metastases, Moleculin Biotech has announced. The drug candidate down-regulates the activated form of STAT3, a target that has a role in supporting the survival and growth of tumour cells. Read more (company press release).

Novocure to form collaboration and licence agreement with Zai Lab for Tumor Treating Fields in Greater China

Novocure has announced a strategic collaboration with Zai Lab, a Shanghai-based innovative biotech company, to licence and commercialise Novocure’s Tumor Treating Fields oncology platform technology, including the brand name Optune. The Tumor Treating Fields platform is currently marketed for the treatment of glioblastoma in the USA, EU, Switzerland, Japan and certain other countries. Zai Lab will also support the enrolment of Chinese patients to certain clinical trials investigating Tumor Treating Fields. Read more (company press release).

And in other news...

Can you help to shape the future of cancer care? All.Can patient survey closes 31 October 2018

An international patient survey administered by All.Can that is gathering insights on inefficiencies in cancer care and is asking cancer patients (and their caregivers/former caregivers) to identify these shortcomings closes on 31st October 2018. All.Can, in which the IBTA is one of the stakeholder organisations, is an international multi-stakeholder policy initiative that is focused on improving efficiency in cancer care.  Survey findings will be revealed later this year and used to inform policy discussions on improving cancer care for all. The survey offers the opportunity to ensure that the patient voice is heard. To take part and learn more, click here.


Less Survivable Cancer Taskforce sets goal of doubling brain tumour survival by 2029

September has seen the launch of the ‘Less Survivable Cancers Taskforce’ campaign to double the five-year survival of brain tumours, and lung, liver, stomach, pancreatic and oesophageal cancers in England. The UK-based initiative is a coalition of six charities, each representing a cancer that has a five-year survival rate of under 30%. To find out more, visit the official website here.

Senator John McCain legacy - raising funds for new brain tumour research position

The family of Senator John McCain has announced that they will raise funds for a brain tumour research position – The John S. McCain III Endowed Chair in Brain Cancer Research – that will be part of the non-profit Translational Genomics Research Institute (TGen). More information is available here.

Conference and event news

Save the date: ISPNO 2020

It has been announced that the 19th International Symposium on Pediatric Neuro-Oncology (ISPNO 2020) will be taking place from 21-24 June 2020 in Karuizawa, Japan. An introductory video can be viewed online here and more information is available from the official website here.

EANO 2018 abstracts available online

The 500 abstracts that have been submitted for the upcoming EANO Meeting 2018, taking place from 10th to 14th October in Stockholm, Sweden, are now available to read online. Abstracts can be read via the detailed programme here (click on the abstract you want to read in Oral Session 1-6 or Poster Viewing I-II).

Brain tumour patient and caregiver events

Brain Tumour Foundation of Canada National Conference 2018 (Toronto)
19-20 October 2018
Toronto, Canada

Women's Retreat for Brain Cancer - Sold out (waiting list available)
19-21 October 2018
Geelong, Victoria, Australia

12th International Brain Tumour Awareness Week
20-27 October 2018
Activities will be held around the world to raise awareness of brain tumours

London Cancer Brain and Spine Patient Event, UCLH Education Centre
25 October 2018
London, UK (For enquiries: email or phone +44(0)203 447 2795)

Brain Tumour Foundation of Canada National Conference 2018 (Montreal)
27 October 2018
Montreal, Canada

Upcoming Scientific Conferences

2018 Tumor Section Satellite Symposium: Innovative Technology that Advances Patient Care
5-6 October 2018
Houston, Texas, USA

11th Annual Scientific Meeting of the Co-operative Trials Group for Neuro-Oncology (COGNO)
7-9 October 2018
Brisbane, Queensland, Australia

13th Congress of EANO
10-14 October 2018
Stockholm, Sweden
If you are attending, please do visit the IBTA booth

ESMO 2018 Congress
19-23 October 2018
Munich, Germany
If you are attending, please do visit the IBTA booth

Neurosciences and Brain Tumour Research: Joining Forces for Greater Impact Workshop
23 October 2018
London, UK

15th Annual Meeting of the Asian Society for Neuro-Oncology (ASNO 2018)
25-28 October 2018
Beijing, China
If you are attending, please do visit the IBTA booth

3rd CNS Anticancer Drug Discovery and Development Conference
14-15 November 2018
New Orleans, Louisiana, USA

23rd Annual Scientific Meeting for the Society for Neuro-Oncology (SNO 2018)
15-18 November 2018
New Orleans, Louisiana, USA
If you are attending, please do visit the IBTA booth

50th Congress of the International Society of Paediatric Oncology (SIOP 2018)
16-19 November 2018
Kyoto, Japan

2nd Annual Miami Brain Symposium
7 December 2018
Miami, Florida, USA

If you are organising or are aware of a forthcoming patient or brain tumour advocacy event or a scientific conference taking place in 2018 then please let us know by emailing so that we can also include it 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 © 2018 The International Brain Tumour Alliance, All rights reserved.


The International Brain Tumour Alliance (IBTA) makes every effort to be accurate regarding the information contained in this e-News (or in any documents, reports, notes or other material produced for and on behalf of the IBTA to which we provide a link in this e-News).  However, the IBTA accepts no liability for any inaccuracies or omissions herein nor can it accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as information on websites to which we link. The information contained in this e-News is for educational purposes only and should in no way be taken as a substitute for medical care nor is the information on the IBTA website meant to constitute medical advice or professional services. For medical care and advice, please contact your doctor. Inclusion of clinical trial news does not imply the IBTA’s particular endorsement or not of any trial.

Other websites linked from the IBTA e-News are not under the control of the IBTA. Therefore we take no responsibility for their content. The IBTA has provided these links as a convenience to you and can in no way verify the information, quality, safety or suitability of linked websites.

Any company sponsorship of the IBTA's projects does not imply the IBTA's endorsement of any particular form or forms of therapy, treatment regimen or behaviour. (For further details of our sponsors, please see our Sponsorship Policy).

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

unsubscribe from this list    update subscription preferences