Spring 2025

Research Matters 

The latest clinical research news from the trust and our partners. 

Welcome to Research Matters

Our research made global headlines following progress we've made towards finding a treatment for rheumatoid arthritis. The trial, led collaboratively by Newcastle Hospitals and Newcastle University, is testing a treatment that could 'calm' the overactive immune response seen in people with rheumatoid arthritis. 

The second phase of the trial is the result of many years' hard work and dedication from Professor John Isaacs and a team of experts. We look forward to the next stage of the trial and how the development of the treatment progresses.  

Highlights and achievements 

• Our vascular research team was awarded 'site of the month' following successful recruitment in March for the EVOCC trial. The trial is comparing open surgery versus keyhole surgery to treat aortoiliac occlusive disease, which causes narrowing or blockage of the aorta, the main blood vessel in the body.
• Our dermatology research team was the top recruiter in March for the PLAN-psoriasis trial. The study aims to understand whether patients can take biologic treatments 'as required' in routine care, whilst still maintaining complete control of their psoriasis.
• First patient randomised to a trial which is assessing efficacy of a medication for people with refractory focal onset epilepsy.
• First patient recruited to rare epilepsy trial that aims to track children and adults who have epilepsy and carry a mutation in the SCN1A gene. Mutations in this gene are a leading cause of epilepsy.
  

We hope you enjoy reading this edition of Research Matters.  If you'd like to receive this newsletter directly to your inbox, please email the clinical research team and we'll add you to the distribution list.

Spotlight on...

John Walton Muscular Dystrophy Research Centre

The team at the John Walton Muscular Dystrophy Research Centre is committed to researching potential treatments and helping patients with muscular dystrophy to live longer, healthier lives. 

Muscular dystrophies are a group of rare conditions that cause muscles to weaken and waste over time.  Sadly, there’s currently no cure and life expectancy can be significantly reduced.

Medical pioneers 

The John Walton Muscular Dystrophy Research Centre, located at the Centre for Life, was first established in 2014 and is run collaboratively by Newcastle Hospitals and Newcastle University. 

The centre was named after John Walton, a North East-born neuroscientist who was regarded as a medical pioneer in muscular dystrophy.

Thanks to the centre’s expertise, we’re trialling potential new medications for conditions that currently have no cure.

Between 2021-24, over 600 patients took part in trials and studies at the centre. A total of 33 commercial trials and 17 non-commercial trials have been opened between 2021 to date.

In 2024, a treatment for Duchenne muscular dystrophy (DMD) was approved for use on the NHS following a trial led by the centre.

The VISION-DMD trial began in 2016, following £4.6m funding from the European Commission.  

It investigated the safety and efficiency of valmolorone, a steroid-like drug that can have fewer side effects than other treatment options while still being as effective.  

Newcastle was the leading site involved in studies of vamorolone and it has been one of the biggest treatment advances for DMD in recent years.

Decade of world-leading research 

The centre, which celebrated a decade of world-leading research last year, is helping patients with other rare conditions, including spinal muscular atrophy (SMA). 

The condition causes muscle weakness that gets worsens over time. Brothers Freddie and Louis Tanner-Boyer both have SMA and receive care at the centre. 

Thanks to the pioneering treatment they have both received, Freddie, who is 7 and Louis, 3, from Gateshead, are doing well and enjoying their lives.

Every four-months, Freddie, who requires a wheelchair, is given the ground-breaking treatment, Nusinersen, that has helped stabilise his symptoms.

Louis received gene therapy as a baby and currently has no symptoms of the condition with full mobility.

Mum Steph is a nurse specialist in neuromuscular diseases at the JWMDRC – a job inspired by the care her sons have received. 

She said: “We feel so lucky that Freddie and Louis receive care at the centre because the treatment they have both received has been life-changing and we’re very thankful for that.

“The centre is a leader in its field – the expertise of the specialists working there is outstanding and the breakthroughs they continue to make offers hope to patients.”

Tanner-Boyer family (L-R) Louis, Steph, Daisy, Freddie, Antoni 

Global leaders 

Thanks to extensive international networking, the centre has become part of major global rare disease initiatives, including the Global Alliance for Genomics and Health and the International Rare Diseases Research Consortium. Other highlights and achievements include:

• International collaborations such as natural history studies of muscular dystrophies. These have paved the way for disease-specific networks and 
  advancing knowledge of these conditions
• Pioneering the application of new technologies in the diagnosis and monitoring of neuromuscular diseases by developing artificial intelligence tools that accelerate the interpretation of MRI scans for health research.

Top news and announcements 

Clinical trial could lead to treatment for rheumatoid arthritis 

Newcastle Hospitals and Newcastle University are leading a clinical trial to test the effectiveness of a potential treatment for rheumatoid arthritis.

Now in the second stage of trials, AuToDECRA-2 is testing an experimental medicine which aims to calm down the over-reactive immune system response seen in rheumatoid arthritis. 

The treatment could provide hope for millions of people suffering from this often debilitating and painful condition. 

Professor John Isaacs is leading the AuToDECRA-2 trial

Newcastle plays pivotal role in 3D heart scans that reduce need for invasive test

The trust played a pivotal role in a national study which assessed new technology to improve diagnosis of coronary heart disease.

The technology, called Heartflow, reduces the need for an invasive angiography by turning a CT scan of the patient’s heart into a personalised 3D image. 

Consultant radiologist, Dr Anna Beattie, led the national study in Newcastle. In addition, she also initiated a preliminary study in 2018 to investigate the clinical impact of adopting the technology.

Since the pilot project was launched in Newcastle in 2018, over 2,300 patients have benefited from the technology.

Dr Anna Beattie (bottom right) and the Heartflow technology 

Step closer to improving breast cancer detection in dense breast tissue

The prototype of a new machine that can detect tumours in women with dense breast tissue has been developed by technology company Kromek, in partnership with Newcastle Hospitals, Newcastle University and University College London (UCL).

Women with dense breasts have high amounts of fibroglandular tissue, which makes their mammogram results appear white. As breast cancers also show up as white on mammogram, distinguishing between the two can be difficult.

Low dose molecular breast imaging could overcome limitations of current screening technology by providing a clearer picture of where a tumour is located. If successful, the technology could enable earlier, faster, more accurate detection of breast cancers in women with dense breast tissue. 

Consultant wins global award for largest trial of its kind

Professor Vijay Kunadian, an honorary interventional cardiologist at the Freeman Hospital, picked up the clinical research excellence award at the Global Cardiovascular Awards.

Prof Kunadian, who is also a professor of interventional cardiology at Newcastle University, received the award in recognition of the SENIOR-RITA trial, the largest and longest study of its kind.

Involving over 1,500 patients across 48 NHS hospitals, the trial compared best treatment options for patients who had suffered a heart attack called a non-ST-segment-elevation myocardial infarction.

Prof. Kunadian receiving her award 

First patient recruited to children's heart trial 

The Freeman Hospital recruited the first patient in the UK to a children's heart trial.

14-year-old Robert Davidson was the first patient to take part in the VALOR trial, which investigates if a medication currently used to treat adults with heart failure can be used in children.

Robert and his brother, Angus, have a muscle-wasting condition called Duchenne muscular dystrophy which can affect the heart.

There is currently little evidence on how effective adult medication is for children, so it is hoped the trial can provide much-needed information in this area. 

L-R: Dad Stuart and mum Lindsay are pictured with research nurse, Kathryn Bell, and Dr Abbas Khushnood, principal investigator for VALOR. Robert is pictured front row left, with brother Angus, right.

Study aims to identify over 200 rare conditions in babies

Newcastle is involved in a national study that aims to detect over 200 rare conditions in newborn babies.

The Generation study, led by Genomics England and NHS England, involves collecting blood from the umbilical cord shortly after birth. This sample is then sent to a lab where whole genome sequencing is carried out to look for variations in DNA that could indicate a disease or condition.

The conditions being tested for usually appear in the first few years of life, can be improved if caught early, and are treated through the NHS in England. 

The team delivering the Generation study at the RVI. Left to right: Michelle Fortune, Moyi Ifediora, Abi Nelson, Diana Zuzzolo, Kate Young, Chloe Couper, and principal investigator for the study, Dr Naveen Athiraman

Trial aims to explore the connection between covid and type 1 diabetes 

A new trial will investigate whether vaccination against COVID-19 in the first year of life can protect children who have an increased genetic risk of developing type 1 diabetes. 

The trust is one of a select number of institutions who are part of the Global Platform for the Prevention of Autoimmune Diabetes.

The platform facilitates a coordinated, multidisciplinary approach to genetic screening and clinical trials for type 1 diabetes with a view to reducing the prevalence of the condition in babies.

Mum Leona is pictured with her daughter, Hollie-mae, the first baby to take part in the trial.

Take part in research

If you'd like to find out about upcoming trials that might be relevant to you, sign up to Research + Me, an online registry for people who are interested in taking part in clinical research.