Welcome to the latest news bulletin from the P-CNS

March 2020

Living through…

With COVID-19 causing ripples throughout every corner of our lives, perhaps this offers an opportune moment for the neurology community (and its vast experience of signposting and providing healthcare for people coping with the stress associated with a neurology-related diagnosis) come together and share any practical tips on coping with stress and anxiety, in particular. 

Not only that, perhaps the community has we can use our years of training, and patient experience/reality, in both mind and brain to support the needs of the wider public, as we cope with an unprecedented global situation. Helping people to understand some of the neuroscience behind, why certain advice is being recommended, may even encourage people to heed the advice. Plus, it could even help the public to appreciate how times like this can have greater impact for a friend or neighbour who has a neurological condition. 

For me, it highlights, more than ever, why the phrase ‘Living through…’, which I’ve adopted and now tend to use when speaking on ‘trauma (mental/physical)’, is one approach that may help draw a person’s attention away from the stress inducing situation. I also see it as offering a way to help focus on the ‘light’ that can appear at the end of a tunnel.

My drive for writing this short note comes from being fortunate enough to have some inspirational friends, such as, Tracy Posner, who wrote this fantastic article for Neurodigest, and Helen Spear, an exemplar when it comes to the role of AHPs in supporting brain tumour patients, and who wrote this insightful article.

March happens to be #braintumourawarenessmonth and #brainnjuryawarenessmonth and both Helen and Tracy are doing wonderful jobs of raising awareness of a condition that has touched all three of us in different ways.

I have no doubt that we will come through this challenging time, but I hope the disruption COVID 19 is causing has a limited impact on you, your family and your friends. In the meantime, we will continue to do our best to serve the information and education needs of primary care and the wider neurology community by keeping the virtual doors of the P-CNS open! 

Best wishes to you all, 


Neil Bindemann PhD
P-CNS Executive Director


EQOL: a new online epilepsy hub

Epilepsy Quality of Life (EQOL) is a new online hub where people will be able to share information and resources to supporting families and individuals diagnosed with epilepsy. The P-CNS secretariat, Innervate Ltd, along with the web designer team at  Base 8 Innovation have worked in partnership to bring this project alive. Thanks must go to Nutricia, P-CNS corporate partner, who have helped to fund this exciting project. The website was launched on Purple Day 2020, and can be found at www.eqol.org.uk

New Corporate Partner

We are pleased to announce that Symprove Ltd, a company committed to developing the understanding of the role of the gut microbiome through extensive research and testing, has become our latest corporate partner. Founded in 2002, Symprove Ltd is committed to developing the understanding of the role of the gut microbiome through extensive research and testing. They developed a unique water-based food supplement called Symprove. Launched in 2010 it contains four unique strains of live and active bacteria to support a healthy microbiome within the context of a healthy diet and lifestyle. To read more about their product and the company, visit their health professionals website here. 

In other news….

Virtual Neurocare

As many of people gear up to work from home and limit their travel for the next few weeks and possibly months, we thought that over the next few newsletters we would start to highlight examples of what we have called ‘Virtual Neurocare’. We’re going to start with the good old telephone system and highlight the excellent support that charities like the Brain and Spine Foundation provide with their telephone helpline. As it becomes more difficult to see a doctor face-to-face in the coming months, virtual healthcare information and support like the nurse manned Brain and Spine Foundation telephone service are set to become even more important. If you have a service like this that we can direct people to, then email us at info@p-cns.org.uk and we will look at placing the details on our website. 

New Clinically Appraised Topics for mild cognitive impairment.  

To address gaps in knowledge on the key topic of cognitive dysfunction in Parkinson’s, the Parkinson’s UK Excellence Network’s multidisciplinary Evidence-Based Practice Working Group, have developed a new a series of critically appraised topics (CATs) on the clinical assessment and management of mild cognitive impairment. The CATs are supplemented by a convenient, quick-reference clinical algorithm. This combines best available evidence, clinical expertise and individual patient preference. To read more about the CAT click here and for the latest Excellence Network newsletter click here.

UK-based Sleep Council and the Sleep Charity release their Sleep Manifesto

The Sleep Charity and The Sleep Council are two UK-based organisation that are working together to raise awareness that sleep is a vital component of health and wellbeing and that everyone living with sleep issues should have access to effective, consistent, evidence-based support.  At the recent launch of their ‘Sleep Manifesto’, held at the Houses of Parliament, P-CNS Exec Director, Neil Bindemann, who was invited to speak, highlighted as part of his talk, some of the research that is helping neuroscientists to better understand why we sleep. Both organisations campaigning for the government to raise greater awareness of the wide-ranging effects of poor sleep.


Look out for your 2020 issue of Neurodigest which is going to press shorty. If you haven’t previously received a copy it’s not too late to subscribe. You can do that at www.neurodigest.co.uk

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 admin@ebrain.net

Access to e-brain is free once you join the P-CNS for £45. For further details and how to get access click here. 

To reach any of our previous newsletters click here.

Corporate Partner News

In this section our corporate partners can relay their latest news. Over the coming weeks we start to populate this page with news links.

For instance to read about the latest news from the Parkinson’s Excellence Network, click on the link below.

Click here!

Neurodigest News

Neurodigest is our journal produced in partnership with Advances in Clinical Neuroscience and Rehabilitation, designed to help keep you up to date with developments in neurology to support the management of people with neurological conditions in primary care and the wider community setting. Our latest newsletter can be read from here.

Advances in Clinical Neuroscience and Rehabilitation – Latest News

Advances in Clinical Neuroscience and Rehabilitation (ACNR) is a peer reviewed open access neurology journal, based in the UK and with international readership. ACNR aims to keep busy practicing neurologists and rehabilitation specialists up-to-date with the latest advances in their fields,  including areas of neurology and neuroscience outside their main area of sub-specialty interest. The latest ACNR newsletter can be read from here.


IBTA e-News

The monthly bulletin for our international brain tumour community

March 2020

Leading news: COVID-19

At this turbulent and extremely challenging time, the International Brain Tumour Alliance would like to express its deepest gratitude to the armies of healthcare professionals and support staff who are selflessly and compassionately caring for patients with COVID-19 around the world, despite the great danger that they themselves face.  We also salute the dedicated teams of researchers around the world who are working tirelessly for a desperately-needed coronavirus vaccine and also a cure.

As human beings, we all need to feel connected to each other and now, more than ever, it’s crucial for the bridge building between our countries and communities to continue based on new models of communication and sharing. It has always been the IBTA’s honour and privilege to build bridges across our brain tumour communities around the globe and we will continue to do so during this crisis.  The world has suddenly changed and although much remains uncertain and threatening to us all, we will get through this by working together and looking forward to better, safer times.

The IBTA’s COVID-19 international information page is now online

In light of the growing global COVID-19 crisis, it is vital that accurate, up-to-date information is available to brain tumour patients, their families, caregivers and healthcare professionals.
The International Brain Tumour Alliance has assembled a list of COVID-19 information for our global brain tumour community. We have grouped these links into six categories: (1) global websites; (2) information provided by brain tumour patient and caregiver charities and not for profits; (3) information from neuro-oncology societies; (4) information from pan-European organisations; (5) COVID-19 and cancer information and (6) information for individual countries.
You can access the IBTA Covid-19 information page here.

Joint COVID-19 statement from UK brain tumour advocacy organisations

Major UK brain tumour charities and the not-for-profit IBTA have published a joint statement to the UK brain tumour community, stressing our support for you and your families during these uncertain times, and how best to stay informed and safe. Read more.

 ‘Beat19’ virtual trial seeks participants, including cancer patients, to track possible coronavirus symptoms

A virtual trial called Beat19, sponsored by cancer research organisation xCuresand created in collaboration with Cancer Commons, has been set up to collect symptoms and outcomes from 100,000 people over the next few weeks so as to generate data to help beat the coronavirus (COVID-19) pandemic. As with other conditions and cancers, it is hoped that the study might reveal the effects of COVID-19 on brain tumour patients and their treatments. Anyone can register on-line – both the well and the symptomatic. This study is IRB (Institutional Review Board) approved and listed on clinicaltrials.gov. Read more.

First global regulatory workshop on COVID-19 vaccine development – report published

The European Medicines Agency (EMA) has announced the publication of a report presenting the outcomes of a virtual workshop on COVID-19 vaccine development, held on 18 March 2020. Chaired by the EMA and the US Food and Drug Administration (FDA), this was the first global regulatory workshop on the subject and was attended by delegates from 17 countries, representing more than 20 medicines regulatory authorities globally. Key topics were: pre-clinical data required to support proceeding to first-in-human clinical trials with investigational medicinal products and the need to address the known theoretical risk that vaccines against COVID-19 enhance the disease prior to starting first-in-human clinical trials. The workshop’s conclusions set out how regulatory authorities around the globe intend to strike the balance between rapid development of vaccines and the need to generate enough robust data to enable decision-making. Read more. Read the full report online here.

EMA gives free scientific advice for COVID-19 vaccine developers

In a separate announcement, the European Medicines Agency (EMA) is now providing full fee waivers for scientific advice applications from developers of potential therapeutics to treat COVID-19 or vaccines to prevent the disease. EMA gives scientific advice by responding to specific questions posed by the medicine developer on the development of a particular medicine or therapy. Developers of potential therapeutics or vaccines against COVID-19 are invited to contact the Agency as soon as possible with information about their proposed development, by emailing 2019-ncov@ema.europa.eu. Read more.

COVID-19 advice given on non-steroidal anti-inflammatory medicines (NSAIDs)

In response to discussions and concerns, especially on social media, which raise questions about whether non-steroidal anti-inflammatory medicines (NSAIDs) such as ibuprofen could worsen coronavirus disease (COVID-19), the European Medicines Agency (EMA) has given advice online about their use. Read more.

EMA’s warning: beware of falsified COVID-19 medicines from unregistered websites

The European Medicines Agency (EMA) is urging the general public not to buy medicines from unauthorised websites and other vendors aiming to exploit fears and concerns during the ongoing pandemic of coronavirus disease (COVID-19). Vendors may claim that their products can treat or prevent COVID-19 or may appear to provide easy access to legitimate medicines that are otherwise not readily available. Such products are likely to be falsified medicines. Read more.

Musella Foundation webinar series goes live 7pm ET (USA) Sunday 5 April, 2020; discussion starts with COVID-19 crisis

A live patient conference, hosted by the Musella Foundation, is now to take place virtually as a webinar series. Addressing a range of the issues affecting the brain tumour community, the first event is this Sunday evening, April 5, 2020 at 7pm ET (USA) with Dr Eric Wong speaking about “Brain tumour patients and the COVID-19 Crisis”. Details about accessing the free-of-charge event can be found online. Read more. The Zoom ‘meeting room’ will open about 15 minutes before the next webinar start (details available here).

UK NICE publishes COVID-19 treatment guidelines

The UK’s National Institute for Health and Care Excellence (NICE), which produces  clinical guidance and advice to improve health and social care, has published COVID-19 rapid guidelines for people receiving systemic anticancer treatments, critical care and kidney dialysis. Adopting an accelerated approach, further evidence reviews are in progress and NICE has waived their normal licensing requirements for reuse or reproduction of their content. Read more. A COVID-19 rapid guideline on the delivery of radiotherapy has been published by NICE here.

Brain tumour news 

National Reimbursement for Optune in Germany

The German Federal Joint Committee (G-BA) has announced that it has updated its directive for Contracted Medical Care to include Tumor Treating Fields, establishing national reimbursement for Optune in newly diagnosed glioblastoma under the country’s compulsory health insurance system. The G-BA’s assessment was based on the EF-14 phase 3 pivotal trial data published in JAMA in December 2017. Read more (Novocure company press release).

Trial of the immune checkpoint inhibitor nivolumab: call for patients with select rare CNS cancers

Researchers at the National Institutes of Health, National Cancer Institute, Center for Cancer Research, US, are seeking adult patients age 18 and older diagnosed with select rare brain or spine tumours (including: medulloblastoma, ependymoma, pineal region tumours, choroid plexus tumours and atypical/malignant meningioma) to participate in a clinical study. Participation will help researchers identify whether stimulating the immune system using the drug nivolumab can shrink tumours or slow their spread. To learn more about this study, email PRPL@cc.nih.gov. or if in the US, call the Office of Patient Recruitment at 800-411-1222,  Refer to NIH Study #17-C-0102. Read more.

US study identifies worse survival in black and Hispanic paediatric brain tumour patients

A population-based analysis of brain tumour survival in patients under 19 years old and published in Scientific Reports has found that black and Hispanic patients (with either primary or metastatic brain tumours) had a higher risk of death compared to white, non-Hispanic patients. Overall, 1,881 patients with central nervous system tumours were identified using the SEER database. Survival was found to be worse for black compared to white patients and worse for Hispanic compared to non-Hispanic patients. Areas of high poverty also demonstrated worse overall survival. However, the study found that because patients of all races and ethnicities presented with cancers of similar stage and aggressiveness, there were no disparities at the time of diagnosis, suggesting that poorer outcomes seem to have their roots in factors that occur after diagnosis, possibly due to the lack of access to high quality care Read more.

‘Bioprinting’ and imaging miniature glioblastoma spheroids

According to a study published in Science Advances, researchers have used 3D bioprinting technology to create miniature brain tumour ‘spheroids’ from patients’ glioblastoma tissue, which are designed to closely model how glioblastoma tumours  behave in the human brain. The researchers developed scanning techniques to image these tumour models as they grew, so that they could test anticancer therapy response over a 70-day period. In the future, these techniques may offer opportunities for rapid, personalised testing of potential therapies, the paper’s authors suggest. Read more.

Report documents the early experiences of particle radiotherapy in high grade glioma patients at the Shanghai Proton and Heavy Ion Center, China

A paper published in the journal Cancer has evaluated early experiences at the Shanghai Proton and Heavy Ion Center in China. Analysing the outcomes of 50 consecutive high grade glioma patients treated at the centre with proton radiotherapy (60 gray‐equivalents in 30 daily fractions), with or without a carbon‐ion radiotherapy (CIRT) boost, the study found that particle radiotherapy was safe, had acceptable adverse effects and produced 18‐month overall survival and progression free survival rates of 72.8% and 59.8% respectively. Read more (full paper).

Gliomas can manipulate the brain’s connections to accelerate its own growth, study finds

A study published in Nature has detailed how glioma tumours alter the behaviour and connections of the surrounding healthy brain cells in ways to promote the tumour’s own growth. Researchers discovered that glioma tumours with certain variants of one gene, called PIK3CA, were able to manipulate the connections and excitability of nearby brain nerve cells, via the secretion of specific molecules belonging to the glypican (GPC) family. Tumour variants which behaved in this way were able to create an environment that helped accelerate their growth, the study found. The paper’s authors suggest these discoveries may open potential targets for drugs to ‘short-circuit’ such glioma-to-brain communication. Read more.

Phase 2 trial of combination bevacizumab and trebananib failed to show improvement in recurrent glioblastoma or gliosarcoma

According to an analysis published in Cancer, A 115-patient phase 2 trial of bevacizumab (Avastin) combined with trebananib in recurrent glioblastoma or gliosarcoma failed to demonstrate clinical benefit and suggested a worse outcome. Although well tolerated, survival was worse in the combination therapy group than in the control (bevacizumab alone) group (median survival of 7.5 months vs 11.5 months). Read more.

Researchers from Finland developing new hybrid scanning technology to improve accuracy of brain tumour diagnoses

A group of neuroscience and neurotechnology researchers has developed a hybrid brain imaging technology designed to improve the detection of cancer tissue and brain disease diagnoses, according to an announcement by Aalto University, Espoo, Finland. The new device combines magnetoencephalography (MEG) and a type of magnetic resonance imaging (MRI). MEG measures tiny magnetic fields produced in the brain, to provide information about the functioning of the nervous system. MRI, meanwhile, is used for producing images of the brain’s structure. The new technology enables a quiet and more open device structure, compared to conventional MRI systems. The team aims to have the technology ready for hospital use and commercialisation by the end of 2021. Read more.

Company news

Enrolment begins for phase 1 clinical trial of Incysus’s drug resistant immunotherapy in newly diagnosed glioblastoma, company announces

Incysus Therapeutics has announced that it has begun a 12-patient phase 1 clinical trial of a novel immunotherapy in newly diagnosed glioblastoma. This trial is being conducted at the University of Alabama at Birmingham (UAB), USA and will test the company’s drug resistant immunotherapy (DRI), which uses a combination of chemotherapy and genetically-modified gamma-delta T cells (a type of immune cell), which resist chemotherapy-induced cell death. The DRI is infused into the surgical cavity following the completion of standard concurrent radiation and chemotherapy with temozolomide. Read more. Clinical trial details available via clinicaltrials.gov.

Midatech expands phase 1 trial of MTX110 in diffuse midline glioma

Midatech Pharma has announced in a press release that it has received regulatory and ethics approval to commence a further exploratory Phase I study for its MTX110 drug for diffuse midline glioma brain tumours at Columbia University in New York, USA. This exploratory study is to be conducted in five patients and will administer MTX110 via a small subcutaneously implanted pump sited in the abdominal wall which has tubing routed under the skin to the base of the brain. This study is in addition to an ongoing safety and dose finding Phase I study of MTX110 at the University of California, San Francisco, which is using an alternative administration system.

Community news

All.Can to become non-profit organisation and appoints new CEO

All.Can International – a multi-stakeholder initiative, in which the IBTA is involved, and which works to improve the efficiency of cancer care – has announced that it will become  an independent non-profit organisation, which will have a base in Brussels, Belgium. As part of this transition, the organisation has appointed Eduardo Pisani to the new role of Chief Executive Officer (CEO). Read more. All.Can is also seeking examples of innovative approaches to cancer care around the world in the face of the COVID-19 crisis to include on its Efficiency Hub. Please submit your examples using the online form here

And finally…

Sharing hope in the face of adversity

This is a truly unprecedented and very uncertain time. As the coronavirus pandemic is forcing countries to shut their borders, require their citizens to isolate, cancel events, close schools and other institutions, ration some foods and household staples and take other extreme measures in order to combat the virus, there is no shortage of acts of kindness, solidarity and love. Below are some examples that we hope demonstrate that the best of humankind still prevails in the face of fear and uncertainty. As J.R.R. Tolkien wrote: “The world is indeed full of peril, and in it there are many dark places; but still there is much that is fair, and though in all lands love is now mingled with grief, it grows perhaps the greater.”

Conference news

Due to the current COVID-19 crisis, many meetings and conferences around the world have been cancelled or postponed.  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.

COVID-19 conference news affecting ASCO and Cancer Research UK Brain Tumour meeting

The American Society of Clinical Oncology (ASCO) 2020 Annual Meeting, due to take place 29 May –  2 June 2020 in Chicago, Illinois, USA has been cancelled as an in-person event but we understand that it is anticipated that the conference’s scientific content will still be delivered in virtual format. Read more

The Cancer Research UK Brain Tumour Conference planned for 12-14 May 2020 in London, UK, has also been cancelled in light of public health concerns surrounding the coronavirus crisis. We understand that the event may be rescheduled Read more.

6th Congress of the European Academy of Neurology (EAN) goes virtual

The 6th Congress of the European Academy of Neurology, from 23 – 26 May 2020 in Paris, France is now taking place as a virtual congress.  All sessions will be available on-demand online for EAN members from 27 May onwards. Any registration fees already paid will be refunded Read more.

19th International Symposium on Pediatric Oncology (ISPNO 2020) rescheduled

Due to the current situation and global uncertainty surrounding COVID-19 (coronavirus), the 19th International Symposium on Pediatric Oncology (ISPNO 2020) has been rescheduled to December 13 (Sun) – 16 (Wed), 2020 (previously planned for June 21 – 24, 2020). The location will be the same and all hotel and registration rates will remain in place.  Read more.

2020 Brain Tumor Epidemiology Consortium (BTEC) postponed

The 2020 Brain Tumor Epidemiology Consortium (BTEC) meeting initially scheduled for June 10-12 in Lyon, France has been postponed, due to the current COVID-19 pandemic. Members and speakers will be notified of a new date by email and changes posted on theevent website.


ABTA Regional Patient and Family Meeting CANCELLED
7 April 2020
Minneapolis, Minnesota, USA

20 June 2020
Tampa, Florida, USA

11-12 September 2020
Rosemont, Illinois, USA

International Brain Tumour Awareness Week CHECK WITH WEBSITE FOR LATEST INFORMATION.
24 – 31 October 2020
COVID-19 permitting, patient advocates around the world will be holding activities to promote awareness of brain tumours


12-14 May 2020
London, UK

14-17 May 2020
Ottawa, Canada

23-26 May 2020
Paris, France 

29 May-2 June 2020
Chicago, Illinois, USA

Brain Tumor Epidemiology Consortium 22nd Annual Meeting (BTEC 2020): “Brain Tumor Biomarkers: For Research, Clinics and Registries” POSTPONED / NEW DATE TO BE ADVISED. CHECK WEBSITE FOR LATEST INFORMATION.
10-12 June 2020
Lyon, France

22-24 June 2020
Warsaw, Poland

2nd Harvard Asia-Pacific Neuro-Oncology CME Conference CHECK WEBSITE FOR LATEST INFORMATION
3-7 August 2020
Lahaina, Hawaii, USA

Brain Tumors – Cold Spring Harbor Laboratory Course  CHECK WEBSITE FOR LATEST INFORMATION
4-10 August 2020
Cold Spring Harbor, New York, USA

2nd Annual SNO Conference on Brain Metastases CHECK WEBSITE FOR LATEST INFORMATION
13-15 August 2020
Toronto, Canada

15th Congress of the European Association of Neuro-Oncology (EANO) CHECK WEBSITE FOR LATEST INFORMATION
10-13 September 2020
Glasgow, UK

10th Annual Brain Metastases and Emerging Therapy Conference CHECK WITH WEBSITE FOR LATEST INFORMATION.
23-25 September 2020
Paris, France

The Royal Marsden Neuro-Oncology Conference: Low Grade Gliomas – The Bigger Picture CHECK WITH WEBSITE FOR LATEST INFORMATION.
15 October 2020
London, UK

13th Annual Scientific Meeting of the Co-operative Trials Group for Neuro-Oncology (COGNO) RESCHEDULED TO OCTOBER 2021. CHECK WEBSITE FOR LATEST INFORMATION
18-20 October 2020
Melbourne, Australia

17th Annual Meeting of the Asian Society for Neuro-Oncology (ASNO) CHECK WITH WEBSITE FOR LATEST INFORMATION.
28-31 October 2020
Bali, Indonesia

25th Annual Meeting of the Society for Neuro-Oncology (SNO 2020) CHECK WITH WEBSITE FOR LATEST INFORMATION.
18-22 November 2020
Austin, Texas, USA

19th International Symposium on Pediatric Oncology (ISPNO 2020) [RESCHEDULED FROM JUNE 2020]
(Introductory video can be viewed here)
13-16 December 2020
Karuizawa, Nagano, Japan


6th Quadrennial Meeting of the World Federation of Neuro-Oncology Societies (WFNOS) and 18th Meeting of the Asian Society for Neuro-Oncology (ASNO)
6-9 May 2021
Seoul, South Korea

13th Annual Scientific Meeting of the Co-operative Trials Group for Neuro-Oncology (COGNO) [RESCHEDULED FROM OCTOBER 2020]
Date TBC 
Melbourne, Australia

25th Annual Scientific Meeting of the Society for Neuro-Oncology (SNO 2021)
17-21 November 2021
Boston, Massachusetts, USA

If you are organising or are aware of a forthcoming patient or brain tumour advocacy event or a scientific conference taking place in 2020 or 2021 then please let us know by emailingkathy@theibta.org   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.