Breakthrough Trials Open to Rare Cancer Patients
Better chance of survival for people with rare cancers thanks to a new government approach to clinical trials and access to breakthrough treatments
- Rare cancer patients to receive faster access to life-changing clinical trials through the NHS App
- Government to prioritise neglected rare cancers with appointment of new national leads for rare cancers
- Improvements follow a £32.3m boost to brain cancer research funding since July 2024
Patients with rare cancers - including brain cancers - will have a better chance of survival thanks to a new government approach to clinical trials and access to breakthrough treatments previously out of reach.
As part of the government's new National Cancer Plan - and the Rare Cancers Bill which was introduced by Dr Scott Arthur MP and is currently going through Parliament - patients will be able to take part in clinical trials through the NHS App, giving them the chance to benefit from innovative approaches and technology to help fight their disease.
Initially patients will be able to search for trials on the clinical research database and ask to be contacted. In time patients will be able to sign up to automatically be offered the opportunity to receive details of clinical trials that might benefit them.
Expanding the 'doctor in your pocket' NHS App is about creating a truly empowering, digitally enabled NHS, from booking your GP appointment, to managing existing care all the way to receiving notifications on the latest research trials and state-of-the-art treatment.
And the government is determined nobody is left behind. Over the next three years the Rare Cancers Bill - designed to incentivise research and investment into the treatment of rare cancers - will help provide more consistent access to research and faster progress from discovery to treatment and ensure the government hires more cancer experts to top national roles to drive this change.
This comes alongside a total £32.3m boost to brain cancer research since July 2024. The money will help develop and enhance trials, focus on new and emerging treatments through precision medicine, provide tailored treatment and help develop the next generation of leaders in brain cancer research.
Top cancer experts will be recruited to help speed up trial referrals whether through the app or face-to-face appointments and consultations. They will include a new national lead for rare cancer and in addition the National Institute for Health and Care Research will create a new Speciality Lead for Rare Cancers. They will oversee a programme to make it easier for clinical trials to take place in England, by ensuring rare cancer patients can be contacted automatically about research and sign up to suitable trials, reducing reliance on chance referrals.
Secretary of State for Health and Social Care, Wes Streeting, said:
I know how painful it is for rare cancer patients and their families to be held back by a clinical trials system that was never designed with them in mind.
We're modernising the NHS so rare cancer patients not only get breakthrough treatments faster, but so we have more experts in the right places able to boost survival rates for rare cancers across the country.
The National Cancer Plan marks a step-change for brain cancer and rare cancer patients, giving researchers the tools they need and patients the hope they deserve.
The government is also strengthening its partnership with Cancer Research UK, including £3 million to co-fund the CRUK Brain Tumour Centres of Excellence starting this year and focused on driving research, improving treatments and enhancing survival rates for both children and adults.
This forms part of the government's commitment to being a leader in Europe for survival for 14 less common and some of the deadliest cancers, including brain cancer, by 2035 and build an NHS fit for the future.
Be Part of Research - a free service which makes it easy to find and take part in vital health and care research across the UK - has already helped more than 100,000 people to take part in research supporting 160 studies including on cancer. By further integrating Be Part of Research into the NHS App patients with rare cancers will - at the click of a button - access greater opportunities of being matched with a trial which could ultimately save their life - and the lives of others.
Science Minister, Lord Vallance said:
Clinical trials are the route by which promising research can be turned into treatments that can change and save lives.
This work, alongside our wider efforts to speed up clinical trials in the UK, will make a real difference in helping more cancer patients access trials and accelerate getting new life-changing treatments to those who need them.
Professor Peter Johnson, National Clinical Director for Cancer at NHS England, said:
People with rare cancers need to know what their options are, and whether more experimental treatments might be possible, especially if their cancer is hard to treat, or previous treatments haven't been successful.
By making it easier for people to take part in the latest clinical trials we will help thousands more to try targeted treatments, as well as driving forward vital research to find out what works for these cancers as soon as possible.
Improving outcomes for those with rare cancers so more people can live longer and healthier lives will be major part of our upcoming National Cancer Plan.
Prof Lucy Chappell, DHSC Chief Scientific Advisor and Chief Executive of the NIHR, said:
The NIHR's mission is to improve the lives of patients and their families through world-class research. As well as funding trials, we want to improve access to them, so that even more people can benefit from the cutting-edge science the UK produces.
With this significant funding, and by establishing the Brain Tumour Research Consortium, we help ensure that people living with brain and other rare cancers are at the forefront of medical breakthroughs. And with our Be Part of Research service now available on the NHS App, it is easier than ever to find and join clinical trials.
More than 10,000 people are diagnosed with a brain tumour each year yet survival rates have fallen behind other cancers.
In 2023 dad-of-three Mike Shurmer, 65, from Swindon began hearing music in his head when none was playing. After many tests, checks and scans he was diagnosed with a brain tumour and given a year to live - but after taking part in the NIHR funded FUTURE-GB trial he and his family have got longer together than they could have hoped.
The trial involved using state-of-the art technology to remove more of the tumour without damaging brain function than was previously possible.
A recurrence in 2025 led to further meticulous surgery. The treatment was again a success and Mike is now able to manage his condition. As well as ongoing drug treatment Mike uses Optune Gio - a portable, wearable medical device that treats glioblastoma by targeting cancer cells with low-intensity electric fields, preventing them from multiplying.
Mike has been so inspired by the help he received he now helps others. Together with the family who still have their loving husband and father, he completed 12 challenges in 12 months to raise £12,000 for Brainstorm Charity.
Mike said:
Take your opportunity to take part in a research trial, please do it. The findings from these studies will help innovative surgery become normal, and move the dial forward, which is fantastic.
This government is determined to tackle the barriers many people still face in accessing the treatment they need, where participation in trials can be restricted based on geography or timing rather than patient need.
Professor Richard Gilbertson, Chair, Tessa Jowell Brain Cancer Mission, said:
We are delighted and excited by today's announcement of a substantial increase in funding for brain tumour research. This much needed support will help us in our efforts to end the scourge of brain tumours that kill more children, young people and young adults than any other cancer.
Thanks to the hard work of all partners, patients and families united through the Tessa Jowell Brain Cancer Mission, the community is ready more than ever to use this resource to take on the challenge of diseases.
Head of Clinical Research at Cancer Research UK, Dr Graham Cadwallader, said:
Rare cancers make up around 24% of all cancer diagnoses in the UK and EU, with patients too often facing slow progress and few treatment options. For new treatments to reach people faster, we need strong investment in the science which powers these treatments from the lab to the clinic. We are proud to support the Rare Cancers Bill's efforts to improve access to clinical trials for people living with rare cancers in the UK.
We also welcome this funding for our Brain Tumour Centres of Excellence. It is a positive endorsement of the high-quality research these centres are delivering. This support will help accelerate progress towards new treatments for the thousands of adults and children diagnosed with a brain tumour in the UK each year.
To strengthen this work still further the government plans to establish a Cancer Clinical Trials Accelerator, hosted and delivered through the NIHR Industry Hub.
This will improve the speed and reliability of cancer trials as well as increasing their size and scope. By having a single pathway and clearer routes for investment everyone will benefit.
Dan Knowles, CEO at Brain Tumour Research, said:
Brain tumours are the biggest cancer killer of children and adults under the age of 40 and greater investment in research and wider access to clinical trials is the only way to change this.
We are hopeful that this government's commitment to a national lead for rare cancers, further investment in innovation and a simpler pathway to accessing clinical trials will mean that when people are given the life changing news that they have a brain tumour, they are presented with options, something that is lacking for many right now.
We look forward to working with government to ensure that the implementation of the National Cancer Plan genuinely makes a difference for the brain tumour community.
Taken together the Rare Cancers Bill, Cancer Clinical Trials Accelerator, strengthened partnerships with Cancer Research UK, record funding and the forthcoming National Cancer Plan represent a step-change for brain cancer patients - replacing delay and fragmentation with access, co-ordination and hope.
This follows on from a £32.3m boost to brain cancer research since July 2024 including an increased investment in the NIHR Brain Tumour Research Consortium up to an expected £25.5 million.
The consortium brings together 48 organisations to deliver a nationally co-ordinated programme of research designed to accelerate the development and evaluation of new brain cancer treatments for adults and children.
https://www.gov.uk/government/news/greater-access-to-breakthrough-trials-for-rare-cancer-patients
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