In Brain News, Campaign News, Charity News, Research News

There’s been a fair amount of news about a early phase trial for people living with GBM. A groundbreaking new treatment for aggressive, treatment- resistant cancers has just secured £70 million in funding and is heading towards clinical trials in early 2026. This isn’t just another incremental step forward – it’s a completely new approach that could change the game for people living with aggressive cancers, including GBM.

What makes this different?
This research takes a new approach by doing two powerful things at once. The team at Trogenix (a biotech company spun out from the University of Edinburgh) has developed a clever gene therapy, (including a technology platform called Odysseus) that both destroys cancer cells AND teaches the immune system to fight back. It’s a combined assault against glioblastoma.

How does it work?
The treatment uses a harmless virus (called an adeno-associated virus, or AAV) as a delivery vehicle. This courier gets injected directly into the tumour and seeks out glioblastoma cells. Inside this virus is a specially designed piece of DNA with three intuitive parts:

The sensor: this part switches on inside aggressive glioblastoma cells. It stays away from healthy brain cells, which means the treatment knows exactly where to go and what to target.

The toxic producer: this produces an enzyme that works with a drug taken by mouth to create something toxic. It kills the cancer cell it’s in, plus its nearby neighbours.

The immune wake-up call: The therapy produces a powerful immune signal called IL-12 that essentially wakes up your immune system so that it attacks the cancer cells. But the really exciting news: this doesn’t just deal with the tumour that’s there now. It also trains the immune system to remember what glioblastoma looks like. So, if any cancer cells are hiding or if the disease tries to come back, the body already knows how to fight it off.

What does this mean for people living with GBM?
For anyone living with GBM, the challenges of this disease are already well known. Current treatments are tough, and outcomes haven’t changed over the years. What makes this approach so promising is the potential for what researchers are calling a “one-and-done” treatment – a single therapy that could not only tackle the tumour but also provide long- lasting protection. And because it specifically targets cancer cells while leaving healthy ones alone, there’s hope for fewer side effects compared to traditional treatments that can’t always tell the
difference between the good cells and the bad ones.

The importance of the patient and caregiver perspective
What’s been particularly encouraging about this research is that the patient voice has been part of the journey and brainstrust is delighted to have a played a role . We reviewed this research from a patient and caregiver perspective a year ago as part of the BTR NTA programme and it’s clear that the team behind this work understand
what really matters to people living with glioblastoma and their families. Dr Helen Bulbeck, brainstrust Director of Services and Policy commented, “It’s a privilege to represent patient and caregiver voices on this programme, as Brain Tumour Research works to see more therapeutics or devices enter human trials and more research focused on drug discovery.”

What’s next?
The team at Trogenix is now working towards an early phase clinical trial, with the first glioblastoma patient expected to receive the treatment in early 2026. That might feel like a long time when you’re living with this disease day by day, but in research terms, this is quite quick. It’s important to be realistic – this is still early-stage research, and we won’t know how well it works until the clinical trials are completed. Not every promising treatment in the lab translates to success in patients. But the science behind this is solid, the funding is substantial, and there’s genuine reason for optimism.

Beyond GBM
The technology platform behind this treatment (called Odysseus®) is also being developed for other aggressive cancers, including colorectal cancer liver metastases, liver cancer, and lung cancer. The approach could potentially help many people beyond the brain cancer community.

The bottom line
Living with glioblastoma requires enormous resilience while managing the day-to-day reality of this disease. What’s  encouraging about this research is that it represents a fundamentally different way of thinking about treatment – not just killing cancer cells but empowering the immune system to become a long-term guardian against the disease. This is exactly the kind of innovative, ambitious research that the glioblastoma community needs and deserves. If you want to learn more about Trogenix and its work, you can visit the website at www.trogenix.com.

To support research like this, you can get involved with brainstrust’s PRIME programme. Find out more here.

Calmness and confidence- Hypnotherapy workshop Oct 29th 7.00pmEvents, Patient & Carer Events

Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php