NHS App to open clinical trials to rare cancer patients

You shouldn’t have to stumble on a clinical trial by luck. Ministers have announced that the NHS App will help people with rare cancers find and join research as part of a wider National Cancer Plan backed by the Rare Cancers Bill. The Department of Health and Social Care set out the changes on 31 January 2026. (gov.uk)

Here’s what this changes for you. First, you’ll be able to search the Be Part of Research database inside the NHS App and ask to be contacted about studies that might fit. Next, you’ll be able to opt in to receive offers about trials that could benefit you, so opportunities reach you rather than relying on chance referrals. (gov.uk)

Behind the scenes, new national leaders for rare cancers will be recruited, including a National Speciality Lead within the National Institute for Health and Care Research (NIHR). Their job is to speed up referrals to trials-whether you ask via the app or in clinic-and make it simpler for studies to run across England. (gov.uk)

This policy lands with a human face. In 2023, Mike Shurmer from Swindon started hearing music that wasn’t there. Tests found a brain tumour and he was told he might have a year. Joining the NIHR‑funded FUTURE‑GB trial gave him more time with his family by enabling surgeons to remove more tumour tissue safely. After a recurrence in 2025 and further surgery, Mike now manages his condition with ongoing drug treatment and Optune Gio, a wearable device for glioblastoma. His message is simple: if a research opportunity is offered, consider it. (gov.uk)

The plan comes with money for science. Since July 2024, government has added £32.3 million to brain cancer research to expand trials, develop precision treatments and grow the next generation of research leaders. Cancer Research UK will also receive £3 million, co‑funded with government, for its Brain Tumour Centres of Excellence. (gov.uk) Officials say the NIHR Brain Tumour Research Consortium is expected to reach £25.5 million and now brings together 48 organisations to co‑ordinate studies nationwide. More than 10,000 people are diagnosed with a brain tumour each year, so speeding up access to research matters. (gov.uk)

Where the law stands matters too. The Rare Cancers Bill, introduced by Dr Scott Arthur MP on 16 October 2024, passed through the House of Commons on 11 July 2025 and moved to the House of Lords as HL Bill 124. As of 19 January 2026 it is at Lords Committee Stage. (standard.co.uk) If passed, the Bill would place a duty on the Health Secretary to promote research into rare cancers, enable carefully governed data‑sharing to help recruit patients to trials, and require a review of UK rules for “orphan” medicines so promising treatments can move faster from labs to clinics. (commonslibrary.parliament.uk)

What this means in practice inside the NHS App is straightforward. You’ll be able to look up active studies, register interest and-when the automated system is switched on-opt in to receive details of trials that may suit your diagnosis. Be Part of Research, which has already helped more than 100,000 people take part in 160 studies, will be integrated so matching becomes easier at the tap of a button. Always discuss any trial you find with your clinical team. (gov.uk)

Your privacy is part of the design. The Bill text makes clear that any information‑sharing to support trial recruitment must comply with data protection law. It also proposes a working definition of “rare cancer” as one affecting no more than 1 in 2,000 people, and states that the Act would take effect two months after Royal Assent. Consent and safeguards sit alongside the push to widen access. (bills.parliament.uk)

If you’re new to research, here’s a quick primer you can use in class or clinic. Clinical trials test whether a treatment is safe and whether it works. Some trials compare a new treatment to the current standard; others test different doses or combinations. You can withdraw at any time. Ask your clinician about likely benefits, side‑effects, time commitments and how your results will be shared.

This programme is also about fairness. Government says the new national leads and the app‑based contact system are designed to reduce postcode lotteries so people aren’t excluded by where they live or who happens to refer them. (gov.uk) Charities have urged ministers to deliver the wider National Cancer Plan without delay, warning that slow progress costs lives. The message for learners and professionals is the same: good policy must be matched by timely implementation and clear accountability. (ft.com)

For context in your lessons or seminars, Cancer Research UK notes that rare cancers account for around 24% of all cancer diagnoses across the UK and EU, which helps explain why recruitment to trials can be difficult and why digital tools that widen the pool of participants matter. Use this statistic to challenge the idea that “rare” means “small impact”. (gov.uk)

If you or someone you teach or care for has a rare cancer, the next steps are simple and safe. Talk to your consultant or cancer nurse about research options, keep an eye on updates in your NHS App, and remember that joining a study is always your choice. This article is for information and education; it isn’t a medical diagnosis or personalised advice. (gov.uk)