As you can see from this photo of me looking rather solemn, this week I am out of the office. I'm in Edinburgh for the Spring meeting of the Society of British Neurosurgeons (SBNS). The Society very kindly provide Brain Tumour Research with pro bono table space at their Spring and Autumn conferences and it provides us with a welcome opportunity to engage with members of the clinical community.
We asked conference attendees if they had one ask of the Secretary of State for Health, current or future, to move us toward better options and outcomes for UK brain tumour patients what would that ask be.
Dorina Roy (pictured below), a specialist neurosurgery trainee (ST2) shortly taking up a post in Manchester, said: "Protected research time guarantees good quality research and helps protect against burnout. My ask of the current or future Secretary of State for Health would be to make the conditions right for me to develop both as a surgeon and as a researcher - protected research time is critical for this to happen."
This ask chimes with our recently launched manifesto which states that within the next five years;
"We ask the UK Government to ensure that brain tumour research is embedded in national workforce planning. Protected research time for clinicians to contribute to clinical trials or undertake research should be provided. To not do this is to focus on care at the expense of cure. Research time needs to be integrated into clinical practice, not as something separate that is undertaken as a sacrifice."
Consultant Neurosurgeon at Nottingham University Hospitals Stuart Smith's point for the Secretary of State was that "science moves quickly and so Governments must react quickly to new treatments but also to new technologies such as genomic sequencing".
Hilary Duckworth, General Manager UK and Ireland for Novocure Ltd, told me: "It feels like an exciting time in the UK brain tumour space but I would urge the Secretary of State to make conditions conducive for innovative and effective products to gain UK market access as quickly as possible. Brain tumour patients deserve this."
Consultant Neurosurgeon at St George's Hospital, Samantha Heggige's view was: "As someone working in the paediatric space it couldn't be clearer to me that we need the Government to treat brain tumours as a clinical priority and I am aligned with Brain Tumour Research on this."
Another aim of our attendance in Edinburgh was to meet with the Clinical Nurse Specialists and those clinical team members who are at the forefront of patient engagement. We hope as many of them as possible will take copies of our Believe magazine and place them in patient facing areas to let patients and their families know that they are not alone. Believe is the news magazine for brain tumour activists: the latest edition is packed with inspirational stories, awesome achievements, fundraising ideas and so much more.
To request your physical copy, please email supportercare@braintumourresearch.org or call 01908 867200 and we will get one (or more!) shipped out to you as soon as we can.
If you would like to sign up to receive our mailings, including all future editions of Believe Magazine, please fill out our contact form.
Please get in touch if you have a story you’d like to share in the next magazine! We can’t include every story but our Facebook page is a never-ending source of wonderful supporter updates. You can post there at any time.
Brain Tumour Research this week attended Cancer52’s manifesto launch at Westminster.
The manifesto, titled The Other Half: A manifesto to transform outcomes for people with rare and less common cancers, was introduced by Cancer52 CEO Jane Lyons. It was so named because nearly half (47%) of all cancers diagnosed are rare or less common, and 55% of all cancer deaths are from rare or less common cancers.
The manifesto aims to raise the voice of those with these cancers. Jane said it was “the passion of the Cancer52 community that brings the charities together, under so many circumstances, to be heard with one voice”.
Cancer52’s manifesto sets out three priorities:
- To reduce the number of deaths from rare and less common cancers by 15% by 2040, saving 80,000 lives, and address health inequalities that contribute to poorer outcomes
- Increase early diagnosis of rare and less common cancers which will improve patient experience, quality of life and help save more lives
- To call for a new national mission on rare and less common cancers with patient involvement at its core
You can read the manifesto here.
The launch was hosted by former Health Minister and supporter of the All-Party Parliamentary Group on Brain Tumours Will Quince MP.
The former Minister said the focus needed to be on public awareness, knowing the symptoms, early diagnosis and treatment pathways. Mr Quince added: “The life sciences are a real passion of mine, and we need to make sure this sector flourishes – which means patients here in the UK are getting the latest treatments and therapies.”
Our Policy and Public Affairs Manager Thomas Brayford (pictured above with Mr Quince) said: “We welcome Cancer52’s latest manifesto, which helps to shine a light on rare and less common cancers. The other half now needs to be listened to.”
The largest study to date has concluded that using a mobile phone for extended periods is not linked with an increased risk of brain cancer.
Each new generation of mobile technology has triggered questions about the potential risk to the health of users, especially the development of intracranial tumours such as glioma, meningioma and acoustic neuroma. Previous studies have investigated these questions, but there have been well-known problems with the trial design and conflicting conclusions.
Now, the world’s largest multinational long-term follow-up study specifically designed to investigate the potential health risks of mobile phone use has concluded that longer mobile phone use is not associated with an increased risk of developing brain tumours.
The COSMOS study was designed to overcome previous study issues and followed more than 250,000 people to investigate if the use of mobile phones increases the risk of developing brain tumours over time.
Phone users in the UK, Denmark, Finland, the Netherlands and Sweden answered detailed questions about their mobile use (supported with network operator information) and were followed in cancer registries to see if they developed brain tumours.
The occurrence of brain tumours among the 10% of people who spent the most hours on a mobile phone was not significantly different from those who used the mobile phone much less.
Dr Karen Noble, our Director of Research, Policy and Innovation, said: “Mobile phone use and brain tumour risk has long been a question for many in our community, and it is reassuring to now have a robust answer which I’m sure will be welcomed by many nationwide.
However, the causes of brain tumours are still largely unknown, and much more research and investment are needed to unravel the origins of all types of brain tumours in order to get us closer to a cure.”
The Brain Tumour Research Novel Therapeutics Accelerator (BTR-NTA) Committee met in London in November 2023 for the first time. Details of the innovative novel therapies reviewed to accelerate the development of potential treatments for brain tumour patients, have been revealed. The successful two-day meeting looked at three novel therapies, showcasing the need for expert guidance in the brain tumour research space to speed up the progress of new treatments, with the goal of improving outcomes for brain tumour patients.
Providing research groups with guidance on bringing their therapy to market effectively, preclinical study robustness, safety, clinical trial design, regulatory requirements, and commercialisation will help them position their therapeutic on a realistic path to clinical benefit for patients.
Dr Juanita Lopez, BTR-NTA committee member said: “What really stood out was the need. The accelerator is going to have a huge impact going forward.”
The innovative therapies reviewed by committee members from the USA, Europe and UK, included GRACE, a surgically implanted device that delivers electric field therapy directly to the tumour margins following brain tumour removal.
Another project reviewed was MEMRISTIVE, an implantable therapeutic neural interface designed to slow the progression of malignant brain tumours. And the Committee also examined WISTERIAN, a study which aims to explore the effects of giving ADI-PEG20 in combination with radiotherapy prior to tumour resection surgery in newly diagnosed patients with radiologically diagnosed glioblastoma (GBM).
These potential treatments are still being developed in the lab, but the ultimate aim for these research groups is to launch these therapies into first in human trials for brain tumour patients.
Funded by Brain Tumour Research and launched in 2023 by the Tessa Jowell Brain Cancer Mission (TJBCM), the BTR-NTA is designed to identify and provide guidance on the potential barriers that researchers may face in progressing their work to the next stage of development. It offers bespoke feedback from academic and industry experts.
This year, the BTR-NTA programme will review up to eight further therapies and technologies across two meetings in May and November.
For a bit more background on the BTR-NTA programme please read; What is a Novel Therapeutic Accelerator, and why do we need one?
That is it for this week.
Wishing you all a peaceful time until next Friday when we will be back with another campaigning update
Hugh and Thomas