‘‘Wales’s collaborative research culture and specialist infrastructure are helping to position the nation as a growing centre of excellence for paediatric oncology trials’

“Welsh patients can access care that hopefully improves their outcomes, and sponsors can access an important population that has not historically been tapped into.

“Sponsors can have confidence that studies can be delivered efficiently, because we have the patients and expertise, while our children and families receive the support they need throughout the trial,” he concluded.

Wales’s growing reputation received further recognition when Cardiff and Vale University Health Board became a member of Innovative Therapies for Children with Cancer (ITCC), a leading European academic consortium focused on early-phase paediatric cancer trials.

Phil points to a combination of effective infrastructure and collaboration as key to this success. This is underpinned by the One Wales approach, which gives study sponsors direct access to a single, coordinated national system, backed by Welsh Government.

It combines aligned processes, joined-up delivery and a highly skilled, well-connected workforce that works as one to enable efficient trial delivery. This is supported by digitally enabled feasibility, recruitment and follow-up through a connected NHS system and advanced data linkage.

Phil continued: “Studies can be assessed early to ensure they are practical and deliverable in a paediatric setting, while sponsors, investigators and regulators can work together to develop protocols that are appropriate for children rather than adapted directly from adult studies. We can set up quickly and recruit to time and to target, often collaborating nationally to get things up and running.”

For Ceri Hogg, Early Phase Clinical Research Nurse at Noah’s Ark, the most important thing is to be able to give patients access to these cutting-edge trials locally.

Ceri said: “Early-phase clinical trials are generally offered to children and young people who have exhausted standard treatment options. These studies are often evaluating experimental medicines, and before Cardiff became an ECMC site, patients from Wales typically had to travel to centres in England to access them.

“That could create significant challenges for families. Long-distance travel means time away from siblings, support networks, school and work, often at a hugely stressful time. It can also be difficult for children who are already acutely unwell to travel regularly for treatment and monitoring.

“It is equally important to remember the relationships that develop between patients, families and clinical teams. For many families, the Oncology unit becomes an extension of their support network. Being able to access research through the team they already know and trust, rather than handing over to unfamiliar clinicians, can make a significant difference.”

The establishment of the Cardiff ECMC means patients from Wales can now access cutting-edge trials closer to home, while remaining under the care of familiar clinical teams.

Ceri added: “Early-phase studies may, in some cases, prolong life, but they are not curative. They may be trialling a treatment that has been tested in adults, but not children. But they can’t go ahead without families making the incredibly altruistic decision to take part in order to help other families in the future.

“Families regularly tell us how much they value being able to participate within a service they are already familiar with. Removing barriers to participation ultimately helps more children access research.”

Ceri also points to the collaborative culture that exists across paediatric oncology research in Wales. She continued, “Paediatric oncology is a small world, and Wales is a particularly close-knit research community. There is a large amount of specialist expertise and collaboration across our clinical and research teams, and those strong relationships help us deliver studies efficiently while maintaining a positive experience for patients and families.

“Our reputation is growing. We are already receiving referrals from outside Wales and, through ECMC and ITCC accreditations, we hope to provide access to an even wider range of European studies in the future.

“Ultimately, the more trials we can open, the more options we can offer children and young people with cancer in Wales.”

Rhian Thomas-Turner, Head of Paediatric Research at Cardiff and Vale University Health Board, believes one of the strongest indicators of the site’s growing reputation is the number of commercial organisations choosing to return with additional studies, as well as its potential to support other specialities.

She said: “Wales offers a unique combination of specialist pan-age infrastructure, experienced multidisciplinary teams, proven recruitment performance and a collaborative research environment. We can reliably recruit and retain patients through well-characterised health needs across specialties, age ranges, compact geography, clear clinical need and specialist clinical leadership. Together, these strengths are helping to position Wales as a growing centre of excellence for paediatric oncology research.”

“We’re proud that commercial partners are coming back to us for multiple trials. We recently started work on our fourth study with one company and have already begun discussions around a fifth. There is confidence in our ability to deliver, and it’s exciting to see that reputation continuing to grow. As a result, we’re able to take on increasingly complex studies and open up more opportunities for children in Wales and beyond.”

Rhian believes the success of paediatric oncology research is also creating wider benefits across the research ecosystem.

“As new therapies continue to emerge, that combination of expertise, partnership working and patient-centred delivery will be critical to ensuring children and young people gain access to the next generation of advanced therapies, not just in oncology.

“The success we’re seeing in paediatric oncology demonstrates what can be achieved when the right systems, partnerships and expertise are in place. and has the potential to benefit multiple specialities. We are proud in Wales to be built for research: the disease area may be different, but the underlying infrastructure, experience and culture of delivery remain the same.”