NHS inviting 500,000 men to join major prostate cancer research programme

The NHS will begin contacting half a million men from this week inviting them to join a major research programme to improve early detection and treatment of prostate cancer.

Men who have had or are living with prostate cancer will receive letters and text messages explaining how they can register to take part in what is hoped will become one of the world’s largest prostate cancer research resources.

Prostate Progress, which is led by the charity Prostate Cancer Research and supported by the NHS’s DigiTrials recruitment service, is designed to speed up the development of better tests, treatments and care.

The initiative aims to recruit as many participants as possible to improve how prostate cancer is diagnosed and treated as well as understanding the side effects of treatment and the impact on men’s quality of life, helping to shape how future clinical trials and research are carried out.

Actors Stephen Fry and Colin McFarlane have both previously been diagnosed with prostate cancer and are both backing the NHS-supported scheme. Sir Stephen Fry, who was diagnosed with prostate cancer in 2018, has described the initiative as “genuinely hopeful” with the potential for “enormous collective good”.

The programme is particularly keen to hear from Black men, who are at approximately twice the risk of developing prostate cancer, with around one in four Black men in the UK expected to be diagnosed during their lifetime. Better representation will help researchers understand and address differences in diagnosis, treatment and outcomes.

Colin McFarlane, who appeared in the Batman Begins and The Dark Knight films, is encouraging Black men to sign up, saying it will help “ourselves, our fathers, our sons, our brothers, our families and future generations”.

Men who join Prostate Progress will be asked to complete questionnaires about their experiences of living with the disease every few months as well as agreeing for their NHS records to be securely linked and used for approved research purposes.

Verified researchers will then be able compare men’s experiences of living with prostate cancer against their NHS records, including their symptoms and quality of life.

The aim is to help researchers gain unique insights into prostate cancer by combining the two sets of data to understand more about the disease, develop new treatments and tests to improve diagnosis, monitor the safety of treatments, and plan new NHS services.

Prostate cancer is now the most common cancer in the UK, with around 60,000 new cases diagnosed every year and over 12,000 deaths annually.

The government has made cancer research and innovation a key focus of the National Cancer Plan for England – making the NHS the first choice for clinical trials, speeding up the spread of innovation, setting clear priorities for cancer research, and ensuring patients across the country can join clinical trials to support the development of potentially life-saving treatments.

Sir Stephen Fry, who has previously had prostate cancer surgery and is a prostate cancer research ambassador, said: “A prostate cancer diagnosis can knock you sideways and leave you feeling rather powerless – maybe even a little frightened.

“Yet Prostate Progress offers something genuinely hopeful: the chance to turn our individual experiences into knowledge that may help future generations of men live longer, healthier lives.

“It is a simple act, but one with the potential for enormous collective good. If you’ve experienced prostate cancer, I urge you to join me and thousands of others by signing up to Prostate Progress today.”

Colin McFarlane said: “Why are Black men twice as likely to develop prostate cancer? We still don’t know the full answer. Every research study that includes more Black men brings us a step closer to understanding why. That’s why initiatives like Prostate Progress are so important.

“Many Black people may understandably feel cautious about engaging with institutions, shaped by past experiences and a lack of trust. It is important that we recognise those concerns while also creating opportunities for Black men to help shape the future of prostate cancer care.

“Prostate Progress gives us an opportunity to do exactly that. If we’re missing from the data, we’re missing from the solutions. The answers we discover by including more Black men won’t just benefit the Black community they’ll help improve care for everyone.

“If you’re invited to take part, please say yes. This isn’t just about helping science. It’s about helping ourselves, our fathers, our sons, our brothers, our families and future generations. Together, we can help change the future of prostate cancer care. That’s a chance none of us should miss.”

Professor Peter Johnson, NHS National Clinical Director for Cancer, said: “Prostate cancer affects the lives of tens of thousands of men every year – and we’ve seen survival rates rising in recent decades thanks to ground-breaking research and clinical trials.

“It’s really important that we understand how prostate cancer affects men’s lives in detail, which is why we’re joining forces with the charity Prostate Cancer Research, so we can continue to transform care and treatment.

“We’ll be contacting over half a million men over the next few months who have or who have had prostate cancer, and I’d urge anyone who receives an invite to Prostate Progress to sign up.

“Joining Prostate Progress today will make a tremendous difference to the lives of men who are diagnosed with prostate cancer in the future.”

Health Minister James Frith said:“Prostate cancer is now the most common cancer in the UK, and every piece of data we gather brings us closer to the tests and treatments that future patients will depend on to live well for longer.

“Prostate Progress has the potential to become a hugely important resource, but only if men come forward and share their experiences, so I encourage anyone who receives an invitation to sign up.

“This is the kind of innovation the government’s National Cancer Plan is designed to support, making the NHS a world-leading destination for cancer research and ensuring patients across the country can help shape the treatments of tomorrow.”

Junior Hashim, from Northampton, joined an initial pilot of 5,000 recruits to Prostate Progress. He said: “I joined Prostate Progress because I want to help improve the future of prostate cancer diagnosis, treatment and research.

“Sharing my experiences of diagnosis and treatment is one way I can help researchers better understand what living with prostate cancer is really like. As a Black man living with prostate cancer, I know how important it is for more Black men to get involved in research like this.

“There is hope, and by taking part we can help improve outcomes for future generations and move closer to finding better treatments and ultimately a cure.”

Oliver Kemp MBE, CEO of Prostate Cancer Research, said: “Half a million men is a huge number, but every one of them has a unique story that could help save another man’s life. An NHS record can tell us which scans and treatments a man received but only he can tell us what living through prostate cancer was really like. Prostate Progress will bring those two halves together at a scale never before possible, creating a world-leading prostate cancer research platform.

“By bringing together years of NHS records with men’s own experiences, we could understand why some cancers become aggressive, spot dangerous cancers earlier, inform future approaches to screening and match each man with the treatment most likely to help him. We have made huge advances in scans, genetics and treatments in recent years, but we have lacked the data to connect them. This could be the missing piece that turns those advances into longer, better lives.”

More details on Prostate Progress are available at Prostate Progress – Prostate Cancer Research