P-CNS newsletter: Spring 2021
As we all emerge from a long period of isolation into the spring sunshine, we send our best wishes to our supporters and followers for their continued good health. We hope that you’ve all managed to navigate your way through this difficult period without too much distress and disruption and this weekend you can enjoy some of the joys of spring, whether in the garden or our for a walk.
Here’s the latest news from the P-CNS:
RCGP One Day Essentials: Recordings now online
We were pleased to co-host a neurology-focused One Day Essentials event with the RCGP in January. Over 100 people attended virtually on the day. Recordings from the event are now available to watch on the RCGP’s website and are free to all those who registered for the January event. If you didn’t attend in January but still want to watch the recordings, the standard ticket price applies.
You can find the recordings here.
Curiate, a new e-learning platform by Innervate
Curiate is a new online learning platform from Innervate Ltd in partnership with the Skills Network. It has been launched with a range of ready-made online short courses support Continuing Professional Development (CPD). We have plans to create new bespoke neurology related courses in partnership, as the platform grows.
All of the currently courses are short bite-sized interactive and engaging CPD models. They are designed to take an average of two hours to complete. They are auto-marked, meaning that feedback is instant, and a CPD certificate is issued on completion of all courses. You can browse or sign up to any of the Curiate course from this address. If you are interest to work with us to build new course material then please email in at email@example.com.
Bolt Burdon Kemp: Our newest sponsor
We are delighted to announce Bolt Burdon Kemp as our newest corporate sponsor!
Bolt Burdon Kemp is a leading firm of solicitors for serious injury claims.
Their specialist brain injury solicitors have over 30 years’ experience in achieving strong results in complex claims involving adults and children with brain injuries. They are recognised as a leading firm in the field of head and brain injury by the independent Chambers and Partners and Legal 500 guides.
Bolt Burdon Kemp’s brain injury specialists understand the far reaching effects of neurological injury on an individual and know the importance of prompt diagnosis, treatment and rehabilitation. They place clients’ wellbeing at the centre of their actions and seek to support them outside of legal process.
Bolt Burdon Kemp’s partnership will help to support the Primary Care and Community Neurology Society’s work to enhance the delivery and quality of care to those with neurological conditions.
How are you Feeling?
We wanted to alert you to a survey that is being run by Innervate Ltd and invite you and any of your colleagues or friends and relatives to take part. The survey is part of wider research to explore whether better recognition of emotions arising from either a physical or mental life event can help to support the health and wellbeing of people. Read more about the survey and see some interim observations here.
MND Community of Practice
Our partners at the MND Association have launched the MND Professionals’ Community of Practice (CoP). The Community is for health and social care professionals practising or interested in the field of MND care. It’s a peer-led group of health and social care professionals encouraging and supporting the development of good care for people living with, or affected by, MND.
Being an active member of the CoP could count towards your professional CPD requirement. To find out more or join the Community of Practice click here.
NeuroLifeNow is a new app and website for people with neurological conditions to share their experiences. The app has been developed by the Brain and Spine Foundation and the Neurological Alliance.
The platform allows for the routine collection of patient experience data, so we can get a real time view of if and how people with neurological conditions are accessing services. This is the pilot phase of the platform, which will run until the end of March 2021. Gathering up this sort of data, in the current circumstances, is of course extremely timely.
Please do download and share the app:
- You can download it from the Apple store here.
- The Google Play store here.
- Or use the web platform here.
Thank you in advance for your support.
Brain Tumour Charity
The Brain Tumour Charity has put together an interactive step-by-step guide for people who have been diagnosed with a brain tumour. The guide covers every part of the patient experience from first symptoms to diagnosis and treatment. It’s a great resource which has been built in collaboration with doctors and people with brain tumour experience, so be sure to share it with anyone who could benefit!
In other news:
NIHR alert: Palliative care for neurological conditions
A new NIHR trial of short-term integrative palliative care (SIPC) in neurological conditions has revealed that SIPC gives the same benefits to patients as standard care at a lower cost per patient. The OPTCARE study, the largest study of palliative care in a variety of neurological conditions, compared two groups of patients receiving SIPC and standard end-of-life treatment for neurological conditions. The findings of the trial can be accessed here.
New neuro rehabilitation centre opened in Salisbury
South Newton Hospital, an independent specialist neurorehabilitation centre in Salisbury, opened its doors for the first time last month. Renovo Care and their parent investment firm Blantyre Capital have invested £1m in the site, which can currently accommodate 17 patients and includes en-suite single bedrooms, a pool, a gym and a mature garden. South Newton Hospital is the fourth neurorehabilitation site that Renovo have acquired since the company’s incorporation in January 2020. Read more here.
From the NHS Networks
The stress-resistant manager: building your resilience
Act FAST campaign to improve stroke outcomes
Ebrain—a leading provider of independent online learning in neurosciences
When did you last look at ebrain? Did you know that all members of this society have free access to ebrain (www.ebrain.net)? It is a non-commercial, charitable initiative that we should all be supporting as much as possible.
Ebrain has over 500 e-learning sessions approved to provide CPD by the Royal College of Physicians, and as the COVID 19 virus has resulted in a lot of CPD events being cancelled it may be a good option for many of us.
There are also practice MCQs, virtual patients, some webinars and a whole load of other content. If anyone in the society has ideas on how it can be developed further to help support us then please contact firstname.lastname@example.org
To find out more about how you can access Ebrain for free visit our website here.
The monthly bulletin for our
international brain tumour community
IBTA 2021 Brain Tumour Magazine published on issuu.com and hard copies printed for distribution
We are delighted to announce that this year’s Brain Tumour magazine has now been published online and in print. Despite another year of pandemic restrictions and lockdowns, the 2021 edition of Brain Tumour has been made possible thanks to the efforts of the healthcare professionals, researchers, advocates and patients from across the globe who have contributed to this year’s edition. Once again, we hope that Brain Tumour will both inspire and inform you and your loved ones. This year’s cover story ‘Why Brainy?’ shines a light on a new organisation established in the midst of the pandemic in Italy to address the many challenges of brain tumours in that country. Featuring stories from around the world, other topics in the magazine include new advocacy organisations, updates on research and treatments, survivorship, patient and caregiver stories, metastatic brain tumours, a day in the life of a brain tumour patient’s nurse navigator, a report of the 12th annual conference of the Indian Society of Neuro-Oncology and many more articles.
To read the 2021 edition of Brain Tumour magazine online click here, or download it here
The print magazine will shortly be distributed for free to recipients in 112 countries. If you would like to receive a copy of the 2021 IBTA magazine and are not on our mailing list, please fill in a subscription form here.
EANO-ESMO guidelines on brain metastases from solid tumours published
The European Association of Neuro-Oncology (EANO) and the European Society for Medical Oncology (ESMO) have jointly published new guidelines for diagnosis, treatment and follow-up of patients with brain metastasis that have spread from solid tumours (excluding those which have spread from lymphoma, leukaemia, and elsewhere in the brain). Treatment and management recommendations are provided based on available scientific data and collective expert opinion. Read more. Full guidelines are available in the ESMO journal Annals of Oncology here (open access).
An international art exhibition to showcase the brilliance of the brain tumour community
People affected by a brain tumour are so much more than their diagnosis and so, to shine a light on the uniqueness of each individual, the IBTA is hosting “Brilliance: A Virtual Exhibition of Creative Works from the Global Brain Tumour Community”. The art exhibition will be launched for viewing on the IBTA website (www.theibta.org) in conjunction with this year’s International Brain Tumour Awareness Week, running from Saturday, October 30 to Saturday, November 6, 2021. Patients, family members, friends, researchers and healthcare professionals of every discipline are invited to submit a photograph of a piece of artwork (up to a maximum of three photos of three artworks) in any medium which they have created. Further details and a registration form for “Brilliance” will be uploaded to the IBTA website by 15th September.
Brain tumour rates fall in the US but survival improves little, study concludes
A collaborative study published in CA: A Cancer Journal for Clinicians has found that rates of malignant brain and other central nervous system (CNS) tumours have fallen by 0.8% year-on-year from 2008 to 2017 in the United States across all ages combined. The decline was driven by trends in adults. However, rates in children and adolescents have increased by 0.5% to 0.7% annually over the same period. Extracting data from the Central Brain Tumor Registry of the United States and other sources, overall survival remains stubbornly low: only 36% of CNS tumour patients survive more than five years after diagnosis, up from 26% for patients diagnosed in the mid-1970s ; five-year survival in glioblastoma has only increased from 4% to 7% over the same interval. Read more.
International Brain Tumour Awareness Week 2021 is fast approaching
This year’s International Brain Tumour Awareness Week will be held from Saturday, 30th October 2021 to Saturday 6th November 2021 inclusive. We know how challenging it remains to organise activities this year because of the pandemic. But there are still things we can all do to raise awareness of brain tumours: for example, you could do a virtual walk; 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 on brain tumours, etc. No matter how small, we would love to know about any activities that raise awareness of brain tumours during this important week in the international brain tumour community’s calendar. Please let us know by completing this form or emailing email@example.com.
Symptom management app for brain tumour patients released
The US National Cancer Institute (NCI) Center for Cancer Research, Neuro-Oncology Branch (NOB) has released a free mobile phone app for brain tumour patients and caregivers to log and track daily symptoms, treatments, and receive self-care advice. Called My STORITM, the app has been developed out of the NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumors) program and in response to published research on what life is like for long-term brain tumour survivors. Currently only available for Apple iPhones, an Android phone version is under development. Read more.
Evidence for managing stroke risk in brain tumour patients published
Given that brain tumour patients are seven times more likely to suffer a stroke than the general population, a paper that has been published in the Journal of Neuroscience Nursing has provided evidence to guide clinical practice on stroke risk. Upon reviewing available published research, the authors highlight that clinicians involved with the long-term care of brain tumour survivors should incorporate stroke prevention in their regular surveillance visits. Read more (free registration may be required).
Researchers report building 3D-printed brain tumour models to test personalised treatments
Researchers have used 3D-printing technology to create small, three-dimensional representations of individual patients’ glioblastoma tumours in the lab complete with a blood supply, according to a study published in the journal Science Advances. These personalised models were printed in layers using specially designed ‘bio-inks’ that mimic living brain tissue. The research team then passed the patients’ own blood through tumours within these models and tested different therapies. Comparing this to flat-plate (two-dimensional) cell culturing testing techniques, the researchers concluded that their new method should more reliably predict whether specific treatments will be effective for individuals and proposed that the technique be used to guide future treatment research. Read more.
Clinical trial testing cannabis spray in recurrent glioblastoma planned
A phase 2 clinical trial involving 15 UK hospitals testing a cannabis-based mouth spray (nabiximols, brand name Sativex) in recurrent glioblastoma is planned to launch in 2022. Funds for the trial are currently being raised and it is hoped that 232 patients across the UK will be recruited into the study. The trial is looking to find out whether patients receiving nabiximols with temozolomide will live longer on average than those receiving temozolomide plus placebo. It will also explore whether quality of life is improved with the spray. Nabiximols is a combination of the two active ingredients in cannabis, THC and CBD, and the planned trial follows results of a phase 1b trial published this year, showing apparent survival improvements. Read more.
Study finds that long-term brain tumour survivors fall into two categories: symptom-free and high symptom burden
A paper analysing the US National Institutes of Health (NIH) Neuro-Oncology Branch’s brain tumour “Natural History Study”, published in the journal Neuro-Oncology Practice, has examined the ‘patient reported outcomes’ of 222 individuals living in the US who have lived with a brain tumour for over five years (termed ‘long-term survivors’). Between September 2016 and October 2019, a battery of health and symptom data was collected. Analysis revealed two distinct groups: 42% of individuals had no moderate-to-severe symptoms while 45% of people reported three or more such symptoms; the most common being fatigue, difficulty remembering, and drowsiness. Severe anxiety, depression, and cognitive symptoms were also reported in up to 23% of participants. These findings underpin the importance of survivorship care programs for patients and should prompt further research, the study’s authors conclude. Read more (full paper).
‘Liquid biopsy’ test successfully detects brain tumours at an early stage, study finds
A non-invasive ‘liquid biopsy’ test for brain tumours can reliably detect gliomas, even when they are small and low-grade, according to a study published in the journal Cancers. In the study, a cohort of 177 patients with varying tumour sizes were assessed via MRI and had a droplet of their serum (the liquid part of blood) passed through a spectrometer, the results of which were analysed with machine-learning software. The ‘liquid biopsy’ was found to be effective in identifying brain tumours in patients with gliomas as small as 0.2cm3. The spectroscopy-based test could be used as a triage method to fast track and prioritise individuals with suspected brain tumours, the authors propose. Read more.
Automated brain tumour diagnosis software can accurately diagnose brain tumour and type, studies show
A team of researchers has developed software that can reliably distinguish and classify brain tumours from a single 3D MRI scan, according to a study published in Radiology: Artificial Intelligence. A total of 2,105 scans, sourced from Washington University School of Medicine and five publicly available databases, were used to train machine-learning software to distinguish six common types of brain tumour from healthy brains. The system was found to be highly accurate at detecting and diagnosing brain tumours when tested against unseen MRI scans. Read more.
Also published recently, a study in Scientific Reports highlights another machine-learning algorithm that can determine with 91–92% accuracy whether a brain tumour is a glioblastoma or a primary central nervous system lymphoma (PCNSL) on MRI, two tumour types which are notoriously difficult to differentiate. Read more (full paper).
Research paper examines how the body’s blood pressure control system is involved in glioblastoma growth
A paper published in the journal Cancers discusses how a well-known hormone system – the Renin–Angiotensin System (RAS) – is involved in glioblastoma formation and growth, and suggests how drugs that interfere with the system may have potential as brain tumour treatments. As well as regulating blood pressure and electrolyte (salts) levels in the blood, the article’s authors summarise published research that shows how RAS hormones directly influence glioblastoma stem cells (the cells believed to drive tumour growth) and how these may be targeted in treatments. Read more (full article).
Glioblastoma patients at high risk of clots and major bleeds, study finds
Patients with glioblastoma suffer high rates of venous thromboembolism (clots spreading from veins around the body) and major bleeding in the brain, according to a study presented at the International Society on Thrombosis and Haemostasis (ISTH) 2021 Congress last month. Analysing the outcomes of 967 glioblastoma patients treated at two institutions in the Netherlands, 12% experienced venous thromboembolism and 16% had major bleeding on average over a 2.5-year period. Read more (free registration may be required).
Study finds combining MRI and PET scan can accurately diagnose brain tumours, avoiding unnecessary procedures
According to a study published in the Journal of Nuclear Medicine, an imaging technique that combines MRI with a type of PET scan (Positron Emission Tomography) has been shown to accurately detect new brain tumour growth as well as distinguishing true cancer progression from ‘pseudoprogression’ (imaging changes that mimic a progressing tumour, but are caused by something else, which most commonly includes inflammation resulting from therapy). In the study, which examined 189 cases, data from MRI combined with PET using a radioactive tracer termed 18F-FET (which is taken up by brain tumours) identified new malignant brain tumours with 85% accuracy and pseudoprogression with 93% accuracy. The hybrid method changed management plans in 33% of cases and prevented 20% of all participants from undergoing unneeded follow-up procedures. Read more.
Immunotherapy is effective alternative to radiotherapy for patients with non-small cell lung cancer brain metastases, meta-analysis shows
In the Journal of Thoracic Oncology, an analysis of previously published studies has concluded that immunotherapy is just as effective as radiotherapy in treating patients with brain metastases that have spread from non-small cell lung cancer. Twelve clinical studies that were included in the analysis looked at individuals who received a type of checkpoint inhibitor therapy (anti–programmed cell death protein 1) without radiotherapy and found that intracranial progression-free survival rate at six months was 30%. Based on these findings, immunotherapy was deemed to be an equally effective alternative to radiotherapy in these patients. Read more (review article).
Repeat surgery for locally recurrent brain metastases should be considered for some patients, study finds
A study published in Neuro-Oncology looking at the outcomes of 180 brain metastases patients whose tumour(s) has recurred has found that repeat brain tumour surgery should be considered in selected patients who have a more favourable prognosis. The average (median) overall survival after re-resection was 13.8 months. Read more (review article).
Dog study finds immune-suppressing cells within high grade gliomas
Published in Veterinary Pathology, an animal study in dogs investigating the number and type of immune cells within gliomas has revealed that high-grade gliomas contain more immune cells (M2-polarised macrophages and regulatory T lymphocytes) that reduce inflammation and impair various parts of the immune system than low-grade gliomas do. It is hoped that targeting these cell types may lead to improved treatments in both animals and humans. Read more.
NaviFUS gets green light from Taiwan Food and Drug Administration to start trial of focused ultrasound system with radiotherapy in recurrent glioblastoma, company announces
A focused ultrasound (FUS) therapy system (NaviFUS®) developed by the biotech company NaviFUS was recently approved for use in a new clinical trial by the Taiwan Food and Drug Administration (TFDA), the company has announced. The trial will be for recurrent glioblastoma and will test whether the technology is safe and can improve the effect of radiotherapy. The focused ultrasound therapy system is designed to open the blood-brain barrier at the tumour site to increase blood flow and oxygen into the tumour and so intensify the tumour cell death from radiotherapy. Another ongoing trial in Taiwan is examining the NaviFUS system as an add-on to bevacizumab in recurrent glioblastoma. Read more (company press release).
ImmVira’s MVR-C5252 anti-glioma virus cleared for glioblastoma clinical trial by US FDA
Biotechnology company ImmVira has announced that its MVR-C5252 treatment for glioblastoma has received clearance from the US Food and Drug Administration (FDA) to proceed with a clinical trial. MVR-C5252 is an engineered herpes virus designed to specifically target glioblastoma tumours and has been developed on the basis of MVR-T3011, another of ImmVira’s anti-glioma viruses, but with additional immune system-enhancing effects. Read more (company press release).
Noxopharm enters collaboration with US National Cancer Institute to develop brain tumour treatment, company announces
Noxopharm has announced a formal collaboration with the US National Cancer Institute (NCI), within the US National Institutes of Health (NIH), in developing its new family of molecules that have dual action anti-cancer effects. Designed specifically for aggressive cancers including brain tumours and pancreatic cancer, these new molecules target the cancer directly and block cancer-promoting ‘helper’ signals from surrounding healthy tissue. The Materials Cooperative Research and Development Agreement (MCRADA) is estimated to last 15-18 months, by which time their lead candidate compound is expected to have been tested on animals and ready to enter human testing. Read more (company press release). Additional details in a later press release are available here.
NOXXON issues update on NOX-A12 brain tumour clinical trial and its expansion
NOXXON has released an update on its NOX-A12 clinical programs in brain and pancreatic cancer. An ongoing phase 1/2 trial of the drug alongside radiotherapy in glioblastoma patients (with MGMT unmethylated status) has reported ‘positive data’ from the first two cohorts of three patients, who have received weekly doses of 200 and 400 mg of NOX-A12. An expansion of the trial is due to take place in September 2021 at the six clinical sites in Germany which are already participating, recruiting patients whose tumours have been completely resected as well as testing a new NOX-A12 treatment combination in patients whose tumours have not been fully resected. Read more (company press release).
Basilea’s lisavanbulin granted orphan drug designation by US FDA
Basilea Pharmaceutica has announced that the US Food and Drug Administration (FDA) has granted orphan drug designation to Basilea’s lisavanbulin for the treatment of malignant glioma, including glioblastoma. Lisavanbulin is a drug that converts into the active form ‘BAL27862’ in the body, which then binds to a structural protein, called tubulin, within cancer cells, leading to cell death. The drug appears to be particularly active in tumours that contain high levels of a specific tubulin protein called EB1 (end-binding protein 1). Orphan drug designation grants various financial and marketing incentives to the company developing the therapy. Read more (company press release).
Conference and Event listings
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
American Brain Tumor Association (ABTA) National Conference
10 and 11 September 2021
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
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
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
International Brain Tumour Awareness Week
30 October – 6 November 2021
Brain Tumour Foundation of Canada Webinar Series
Genomic and Molecular Markers in Glioma: Where Are We Now?
23 November 2021
SCIENTIFIC CONFERENCES 2021
2nd Annual Neuro-Oncology Symposium (2ANOS) – Pakistan Society of Neuro-Oncology
3-5 September 2021
Current and Future Directions in Neuro-Oncology – A Young Investigators Forum
21-23 September 2021
2021 Congress of the European Association of Neuro-Oncology (EANO)
25-26 September 2021
SNO 1st Annual Conference on CNS Clinical Trials
1-2 October 2021
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
2021 Congress of the International Society of Paediatric Oncology (SIOP)
21-24 October 2021
2021 Congress of the European Association of Neuro-Oncology (EANO) Educational Day
23 October 2021
13th Annual Scientific Meeting of the Co-operative Trials Group for Neuro-Oncology (COGNO)
24–26 October 2021
European Cancer Summit (hybrid event)
17-18 November 2021
Brussels, Belgium and Online
2nd Pakistan Paediatric Neuro-Oncology Symposium (PNOS2)
12-13 November 2021
SNO 2021 Annual Meeting and Education Day
18-21 November 2021
Boston, Massachusetts, USA
Flash Radiotherapy and Particle Therapy Conference
1-3 December 2021
Vienna, Austria and Online
SNO Maximal Safe Brain Tumor Resection: Intraoperative Visualization and the Connectome Conference
6-7 December 2021
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
SNOG-FiBTRA Symposium 2022
Joint Symposium of the Scandinavian Society of Neuro-Oncology and the Finnish Brain Tumor Research Association
19-21 May 2022
SIOP Europe Brain Tumor Group Meeting
11-12 June 2022
20th International Symposium on Paediatric Neuro-Oncology (ISPNO 2022)
13-15 June 2022
15th International Stereotactic Radiosurgery Society Congress
19-23 June 2022
Brain Tumors Meeting 2022 – From Biology to Therapy
22-24 June 2022
Posterior Fossa Society – First Global Meeting
9-11 September 2022
16th Congress of the European Association of Neuro-Oncology (EANO)
15-18 September 2022
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 firstname.lastname@example.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.
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.
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