NIHR Leeds Clinical Research Facility

Collaboration at PPI Community Connect 2025 sets direction for more representative research

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A group photo of the PPIE team with the hosts for the event at the Hamara Centre, in front of a stylish neon sign that reads 'HAMARA'.

Our recent Patient Public Involvement (PPI) event was held recently at the Hamara Healthy Living Centre. The PPI Community Connect 2025 event brought together over 86 community members, along with researchers. The event was designed to explore how research can be more meaningful, representative, and inclusive, providing opportunities to share experiences, learn about ongoing studies, and discuss ways to strengthen engagement across diverse communities.

Hosted by the NIHR Leeds Clinical Research Faculty (CRF) and Leeds Teaching Hospitals (LTHT) Research & Innovation department and taking place at the Hamara Healthy Living Centre in Leeds, the event brought together participants who shared experiences and ideas on improving public involvement in research.

The audience heard presentations from researchers outlining current projects, alongside personal stories from patients describing what taking part in research has meant to them.

Guests were welcomed by Dr Helen Radford, Lead for Strategic Leadership at NIHR UK CRF Network and Associate Director of Operations for LTHT Research, and Hanif Ismael, Lead for Patient Public Involvement at NIHR Leeds CRF.

An image of two volunteers with a staff member demonstrating the ECHO cardiac ultrasound machine on a volunteer in the background.

The event showcased a range of ongoing research in Leeds, covering prostate cancer, knee replacement, early detection of lung cancer, and heart health. Alongside these presentations, attendees also had the opportunity to take part in hands-on activities, including an ECHO heart scan demonstration (pictured above), which helped people better understand how research links to real clinical practice.

Contributors, Graham Holland and Imtiaz Chaudary, reflected on their own involvement in research and highlighted the importance of inclusive research.

Attendees also took part in group discussions that explored ways to strengthen engagement, widen participation among under-represented communities, and shape future research priorities.

The conversations touched on topics such as including more community-based sessions, improved multilingual materials, better use of digital and media channels, engaging people at cultural events and public spaces, providing appropriate language support, involving healthcare teams, and offering suitable incentives. and generated suggestions that will inform future initiatives.

Feedback from participants indicated that the event provided a valuable opportunity to ask questions, share experiences, and think about how research and communities can work better together.

One attendee described the day as “Well run, well attended, interactive and informative”, while another said it “was useful and made me willing to engage in research and share the opportunities.”

The organisers plan to use insights from PPI Community Connect 2025 to guide ongoing work on improving patient and public involvement.

For more information, please contact [email protected].

Research experience helps Leeds Young Owls Take flight into medicine

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An image showing people conducting desk research.

Two members of our young research group, the Leeds Young Research Owls have been successfully accepted into universities to study medicine and train to be doctors.

The Leeds Young Research Owls (LYRO) group, funded by NIHR Clinical Research Facility, aims to inspire the next generation of researchers by providing young people with opportunities to learn about the medical research process through the Trust’s extensive research portfolio.

This provides a way to reach younger people and inspire them to become involved and engage with medical science and clinical research, preparing the next generation of researchers.

An image of LYRO alumni, Henry, who has been accepted to medical school. The images is a selfie of Henry standing outside on a track by a field at sunset.
Henry credits his experience with LYRO in getting into medical school

Owls alumni Oliver Barrie and Henry Neligan have both gained places at medical school, a remarkable achievement that reflects their dedication and the valuable experience gained through the group.

Henry (pictured), who is now studying at Newcastle University said: “The Owls and the medical research we took part in was a piece of my inspiration to become a doctor.  I am just so grateful for all the help the Owls has given me!”

Oliver, who is attending Hull York Medical School, added: “I included some of my experiences with LYRO on my personal statement and I also discussed the brilliant insight it gave me into medicine as a whole, and medical research at my interviews. Without the meetings with the Owls, I wouldn’t have had the unique experiences to talk about throughout my application process.”

LYRO now has a proven track record of helping foster the clinicians of the future, with five previous members successfully accepted to medical school to train as doctors.

With a growing legacy of success, LYRO continues to empower young people to pursue careers in medicine and research, fostering the skills and experiences that help shape the future of healthcare. We are incredibly proud of Oliver, Henry, and all our alumni who are making a difference in the medical field.

NIHR Leeds CRF supports new study into Penicillin allergy testing to fight antibiotic resistance  

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An image of a person holding white tablets in their left hand

A trial supported by NIHR Leeds CRF into removing incorrect penicillin allergy labels on GP records could combat antibiotic resistance and save lives, an NIHR-funded clinical trial led by the University of Leeds has found. 

Penicillins are first-choice antibiotics for many common infections, but more than one in 15 UK adults have a penicillin allergy label on their medical records. In the event of an infection, they will be prescribed alternative antibiotics which can be less effective or have more side effects. This can result in several prescriptions being issued to control the infection, which affects wellbeing and contributes to antimicrobial resistance.  

The study published in the Lancet Primary Care, which was supported by NIHR Leeds Clinical Research Facility in Leeds, found that that almost nine in ten (88%) patients with a penicillin allergy label were not truly allergic after testing, and had their allergy label safely removed. More than 800 patients were included in the trial. 

Verifying the accuracy of penicillin allergy labels could help patients to access more effective antibiotics, which is crucial as the threat of antimicrobial resistance to public health grows. The ALABAMA (ALlergy AntiBiotics And Microbial resistAnce) trial, coordinated by the University of Oxford Primary Care Clinical Trials Unit, was created to help find solutions for this issue.  

An image of Dr Jonathan Sandoe
Dr Jonathan Sandoe was joint lead author on the ALABAMA study

Joint lead author Dr Jonathan Sandoe, Associate Clinical Professor in Microbiology in the University of Leeds School of Medicine and Leeds Teaching Hospitals NHS Trust, said: “Antibiotics have been life-saving drugs since the late 1930s, but we are now in an era where microbes are evolving to resist the effects of current antibiotics. The global challenge of antibiotic resistance is causing people to die of common infections – so it is vital to find ways to improve how antibiotics are used. Assessing people with penicillin allergy labels is one way we can achieve this.” 

Read the full story via the University of Leeds website 

Charity partnership backs neuromuscular research powered by NIHR Leeds CRF, enabling life-changing trials for families

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An image of Austin in a hospital bed with him mother Maxine and Dr Anne-Marie Childs sitting at the side of the bed.

Duchenne UK and Leeds Hospitals Charity have partnered to fund two new roles within the Neuromuscular Service over the next five years. Together, they are contributing more than £300,000 to support this specialist team, recognising its status as a centre of excellence in paediatric neuromuscular research.

As part of the service, NIHR Leeds Clinical Research Facility (CRF) Children’s Site delivers pioneering clinical trials, exploring innovative treatments for neuromuscular conditions at Leeds Children’s Hospital and has consistently led the way in this area of research.

The NIHR Leeds CRF has been the first site in the UK to recruit to several clinical studies for Duchenne muscular dystrophy (DMD), the most common and severe form of childhood muscular dystrophy. Most recently, the children’s research unit delivered a landmark Phase 1 trial investigating a promising new treatment for DMD.

11-year-old Austin was diagnosed with the condition in November 2015, at just two years old. Austin’s mother Maxine initially thought he had a virus and took him to hospital, where he spent the next month having tests.

Three years ago, Austin began a trial at the NIHR Clinical Research Facility Children’s Site. Austin has received over 130 infusions, and though he knows he will lose the ability to walk, he tells Maxine he takes part in the trials because, ‘I want to help boys in the future to walk longer.’

For Austin’s family, the opportunity to participate in clinical trials has been a lifeline, offering hope to other families to find better treatments and eventually a cure. Austin’s current trial ends in September, but Maxine says if he chooses to continue to take part in research trials, they will continue to visit hospitals up and down the country.

‘From the moment Austin was diagnosed, our world changed. Nothing could have prepared me for the grief of knowing his life would be cut short. But through the darkness, clinical trials gave us hope. The support from the team in Leeds has been incredible; they’ve become like family. Research is vital, not just for medical breakthroughs, but for families like ours to feel less alone. Austin is paving the way, and we’re so proud of him.’

The funding from Duchenne UK and Leeds Hospital Charity will go towards funding the role of Consultant Paediatric Neurologist Dr Anne-Marie Childs. Dr Childs said the funding would be enable the service to plan for the future.

‘We’re incredibly grateful to both Leeds Hospitals Charity and Duchenne UK for their grant funding to support the children’s neuromuscular service. This investment will allow us to attract the best people to work in the Leeds neuromuscular team and create new opportunities for clinical trials that can support even more families. Neuromuscular conditions have a devastating impact, not just on the child affected but the whole family; funding like this gives hope that new treatments and new drugs can be developed.’

NIHR Leeds CRF at 20th UKCRF Network Conference

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The NIHR Leeds CRF team standing on the steps at the conference.

NIHR Leeds CRF recently attended the 20th annual UKCRF Network Conference in Birmingham, the first to be held jointly with the NIHR Biomedical Research Centres.

Twenty-three of our team members, representing the broad scope of our work in clinical research, joined hundreds of delegates from across the UK to exchange insights and learn about the latest developments in healthcare research. It was an opportunity to create new connections and emphasised the importance of collaboration in delivering world-class research which is truly impactful.

Team members at the conference dinner.
An image of Karl Ward and Helen Radford giving with Karl Ward speaking at the lectern in front of a slide with research colleagues photographed on it.
Four colleagues standing in front of the conference banner reading "Co-operate to Translate".
The NIHR Leeds CRF team standing on the steps at the conference.

Dr Helen Radford and Karl Ward delivered an outstanding session at the conference on the ever-growing role of artificial intelligence in advancing research. Dr Radford also shared valuable reflections into attracting commercial clinical research, and Karl Ward presented our approach for best practice in training and embedding research within NHS teams.

We were also privileged to hear from our patient and public involvement and engagement (PPIE) Manager Hanif Ismail and patient representative Barrow Sawo, who spoke compellingly about overcoming challenges in public engagement, highlighting inclusive strategies for meaningful collaboration.

The team had a great experience celebrating their successes at the conference, where they not only presented their research to peers but also had the opportunity to meet and exchange ideas with other leaders in clinical research delivery. Our thanks to the organisers, we are already looking forward to next year’s conference!