The government’s new approach to clinical trials and access to breakthrough treatments are increasing the chances of survival for patients with rare cancers.
Patients will be able to take part in clinical trials through the NHS app as part of the government’s new National Cancer Plan and the Rare Cancer Bill introduced by Dr Scott Arthur and currently going through Parliament.
This gives them the opportunity to benefit from innovative approaches and technologies to help fight the disease.
Wes Streeting, Secretary of State for Health and Social Care, said: “We are modernizing the NHS so that not only can people with rare cancers access breakthrough treatments sooner, but we can also put more specialists in the right places and improve survival rates for rare cancers across the country.”
“The National Cancer Plan marks a major change for patients with brain tumors and rare cancers, giving researchers the tools they need and patients the hope they deserve.”
Easy access through the NHS app
Initially, patients will be able to search clinical research databases for trials and request to be contacted.
In time, rare cancer patients will be able to sign up to automatically receive details of clinical trials that may be beneficial.
The expansion of the ‘Doctor in your Pocket’ NHS app aims to create a truly empowering, digitally enabled NHS, from making GP appointments to managing your existing treatments to receiving notifications about the latest research trials and cutting-edge treatments.
Improving treatment options through the Rare Cancer Act
Over the next three years, the Rare Cancers Bill aims to encourage research and investment in the treatment of rare cancers, providing more consistent access to research, enabling faster progress from discovery to treatment, and ensuring the government hires more cancer experts into the country’s top roles to drive this change.
This includes funding totaling £32.3 million for brain tumor research since July 2024. The funding will help develop and strengthen clinical trials, focus on novel treatments through precision medicine, deliver personalized treatments, and train the next generation of leaders in brain tumor research.
Appointing top cancer experts to increase efficiency and quality of care
Top cancer experts will be hired to expedite clinical trial referrals, whether through the app or in person.
These will include a new national lead on rare cancers, and the National Institute for Health and Care Excellence will also create a new specialist lead on rare cancers.
These experts will oversee a program that will make it easier to run clinical trials in the UK and reduce reliance on chance referrals by automatically contacting patients with rare cancers about research and enabling them to enroll in appropriate trials.
Improving brain tumor survival rates
More than 10,000 people are diagnosed with brain cancer each year, but survival rates lag behind other cancers.
In 2023, Mike Shermer, a father of three, started hearing music in his head when nothing was playing. After many tests, tests and scans, he was diagnosed with a brain tumor and given one year to live. But after taking part in the NIHR-funded FUTURE-GB clinical trial, he and his family were able to spend more time together than expected.
The trial involved using cutting-edge technology to remove more of the tumor than was previously possible without damaging brain function.
Mike said: “Please take advantage of this opportunity to participate in research trials. We encourage you to get involved. The discoveries made in these studies will help make innovative surgeries the norm and move the dial forward, which is great.”
Bringing new hope to people suffering from rare cancers
The Rare Cancers Bill, Cancer Clinical Trials Accelerator, strengthened partnership with Cancer Research UK, record funding and the upcoming National Cancer Plan collectively represent a major change for people with brain cancer, replacing delay and fragmentation with access, coordination and hope.
This follows a £32.3m increase in brain tumor research since July 2024, including an expected £25.5m increase in investment in the NIHR Brain Tumor Research Consortium.
The consortium brings together 48 organizations to deliver a nationally coordinated research program aimed at accelerating the development and evaluation of new brain tumor treatments for adults and children.
Dan Knowles, CEO of Brain Tumor Research, concludes: “Brain tumors are the number one cancer killer for children and adults under 40, and increasing investment in research and expanding access to clinical trials is the only way to change this.
“We hope that the Government’s commitment to a national lead on rare cancers, further investment in innovation and easier routes to clinical trials will provide people with options when they receive the life-changing news that they have a brain tumor, something that is currently missing for many people.”
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