UK Government Launches Major Initiative to Improve Brain Tumour Clinical Trial Access Through NHS App Integration
Key Insights
The UK government is integrating clinical trial access into the NHS App, allowing brain tumour (search) and rare cancer (search) patients to search for and sign up to relevant trials automatically.
A new £32.3 million funding boost since July 2024 supports brain cancer (search) research, including the establishment of national rare cancer (search) leads and enhanced trial coordination.
The Brain Tumour Charity (search) is co-funding ACT-BT, a University of Leeds-hosted initiative featuring a 10-expert panel to match patients with appropriate clinical trials across the UK.
The UK government has announced a comprehensive initiative to revolutionize access to brain tumour (search) clinical trials, integrating trial matching capabilities directly into the NHS App while providing substantial new funding for rare cancer (search) research. The move addresses the critical challenge that brain tumours have the lowest clinical trial recruitment rates of all cancer types in the UK, with only 12% of patients currently participating in research studies.
Digital Innovation Through NHS App Integration
Patients with rare cancers, including brain cancers, will soon be able to search for clinical trials through the NHS App and request contact from research teams. The system will eventually enable automatic notifications when relevant trials become available, transforming the traditionally fragmented approach to trial recruitment.
"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," said Professor Peter Johnson, National Clinical Director for Cancer at NHS England (search).
The initiative builds on the existing Be Part of Research service, which has already facilitated participation of more than 100,000 people across 160 studies. By integrating this platform into the NHS App, patients will have streamlined access to potentially life-saving experimental treatments.
Substantial Research Funding and Leadership Appointments
The government has committed £32.3 million to brain cancer (search) research since July 2024, including up to £25.5 million for the NIHR (search) Brain Tumour Research (search) Consortium. This consortium unites 48 organizations in a nationally coordinated research program focused on accelerating treatment development for both adults and children.
New leadership positions will drive this transformation, including a national lead for rare cancers and a new NIHR (search) Specialty Lead for Rare Cancers. These experts will oversee programs designed to reduce reliance on chance referrals and ensure systematic patient contact about relevant research opportunities.
"We're modernising the NHS so rare cancer (search) 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," said Health Secretary Wes Streeting.
ACT-BT Initiative Addresses Systemic Barriers
Complementing the government's efforts, The Brain Tumour Charity (search) is co-funding Access to Clinical Trials for Brain Tumours (ACT-BT), hosted by the University of Leeds. This initiative directly tackles the barriers identified in the charity's research, including limited awareness of research opportunities and uneven trial distribution across the country.
The ACT-BT panel consists of 10 experts from across the UK who meet weekly, with each member serving as a lead researcher of national studies. Consultants can refer adult patients with primary brain tumours through a simple online form and receive individualized advice about trial eligibility.
"Brain tumours remain the biggest cancer killer of people under 40 years old. Progress has been frustratingly slow, not helped by the systemic barriers that mean just 12% of brain tumour (search) patients have taken part in a clinical trial," said Dr Michele Afif, Chief Executive at The Brain Tumour Charity (search).
Professor Susan Short, co-director of the Leeds Cancer Research Centre and ACT-BT lead, brings extensive experience running clinical studies for brain tumour (search) patients to the initiative, which is expected to open for referrals in late spring.
Patient Success Stories Demonstrate Impact
The transformative potential of improved trial access is exemplified by patient experiences. Owen Sutton, 26, from Tamworth, was diagnosed with a low-grade pilocytic astrocytoma (search) during university and experienced significant challenges including relearning to walk and talk after stroke complications during surgery.
After joining a clinical trial at HCA London in 2021, Owen's seizures stopped and scans showed shrinkage of his tumour's cystic element. "I am so grateful to be on a clinical trial that enables me to lead a close-to-normal life. The team monitors me closely, and with regular MRIs and check-ups, I feel incredibly safe, supported and hopeful," Owen said.
Similarly, Mike Shurmer, 65, from Swindon, participated in the NIHR (search)-funded FUTURE-GB trial after being diagnosed with a brain tumour (search) and given a year to live. The trial utilized advanced technology to remove more tumour tissue without damaging brain function, extending his time with family beyond initial expectations.
Collaborative Approach and Future Outlook
The initiative emphasizes patient involvement through the Patient and Public Involvement and Engagement element, overseen by brainstrust (search). Up to 10 patients and caregivers will contribute perspectives at each development stage.
"Patient voices must be at the heart of improving access to clinical trials. Through our work with ACT-BT, we're ensuring that people affected by brain tumours can shape this initiative from the ground up," said Dr Helen Bulbeck, co-founder of brainstrust (search).
The government plans to establish a Cancer Clinical Trials Accelerator through the NIHR (search) Industry Hub, creating a single pathway for investment and improving trial speed, reliability, size, and scope. This comprehensive approach, combined with the Rare Cancers Bill currently progressing through Parliament, represents what officials describe as a "step-change" for brain cancer (search) patients, replacing delay and fragmentation with coordinated access and hope.
More than 10,000 people receive brain tumour (search) diagnoses annually in the UK, yet survival rates have lagged behind other cancer types, making these coordinated efforts particularly crucial for improving patient outcomes.