Patients with rare cancers, including aggressive and hard‑to‑treat brain cancers, will benefit from faster access to breakthrough treatments under a major new government initiative aimed at transforming the way clinical trials are delivered across England.
The package forms part of the government’s forthcoming National Cancer Plan and the Rare Cancers Bill, introduced by Dr Scott Arthur MP and currently progressing through Parliament. Together, they represent a step‑change in tackling some of the deadliest and least understood cancers.
For the first time, patients will be able to search for and request contact about clinical trials directly through the NHS App, giving them faster access to research opportunities that could extend or even save their lives.
The rollout will happen in stages:
- Phase 1: Patients can search the NHS clinical research database and ask to be contacted about trials.
- Phase 2: Patients can opt in to receive automatic notifications when relevant trials become available.
The move is part of an expanded, digitally enabled NHS App supporting everything from GP bookings to personalised research alerts.
Over the next three years, the Rare Cancers Bill will incentivise new research, speed up the journey from discovery to treatment, and ensure more cancer experts are appointed to top national roles to lead this change.
This follows a £32.3 million investment boost in brain cancer research since July 2024, accelerating trial development, expanding precision medicine research and helping train the next generation of brain cancer specialists.
To maximise the impact of the reforms, the government will recruit a National Lead for Rare Cancer, and a new NIHR Specialty Lead for Rare Cancers.
These experts will drive faster trial referrals, both through the app and via traditional clinical pathways, and oversee programmes that allow researchers to contact suitable rare cancer patients automatically, reducing reliance on chance referrals.
The government is expanding collaboration with Cancer Research UK, including:
- £3 million to co‑fund CRUK’s Brain Tumour Centres of Excellence
- A focus on boosting research for both adults and children
- Work to accelerate access to new treatments and improve survival
This is part of a long‑term ambition to make the UK a European leader in survival for 14 less common, and often deadliest, cancers by 2035.
The government will also integrate Be Part of Research – a free national platform that has helped more than 100,000 people join studies supporting 160 research projects – into the NHS App.
This means patients with rare cancers will be able to match with clinical trials at the click of a button, opening the door to innovative treatments previously out of reach.
A new Cancer Clinical Trials Accelerator, delivered through the NIHR Industry Hub, will:
- Speed up cancer trial approvals and delivery
- Increase the number and scale of studies
- Provide a single, clearer route for investment
- Boost reliability and efficiency across the system
Health Secretary 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 £32.3 million boost includes increased investment in the NIHR Brain Tumour Research Consortium, expected to rise to £25.5 million. The consortium brings together 48 organisations to deliver a nationally coordinated programme to speed up the development and evaluation of life‑saving treatments for adults and children.
More than 10,000 people are diagnosed with a brain tumour each year, yet survival rates have not kept pace with other cancers. Ministers say today’s actions mark “the beginning of a new era” for rare cancer patients across the UK.
Image credit: iStock
