It’s the second most common bone condition in the UK, affecting the lives of almost one million of us - yet the vast majority of people have never even heard of Paget’s disease.
Now, Nottingham is to be officially recognised for its expertise in treating and researching this little known disorder.
Thanks to a collaboration between academics at The University of Nottingham and clinicians at Nottingham University Hospitals NHS Trust, the city has been announced as one of 10 new centres of excellence by the national charity The Paget’s Association.
Dr Robert Layfield in the University’s School of Life Sciences is leading the research, which also draws on the expertise of Professor Mark Searle in the University’s School of Chemistry.
Dr Layfield said: “Nottingham has an international reputation for its expertise in Paget’s disease and the University’s research has helped to significantly further our understanding of the underlying disease mechanisms.
“By developing collaboration with clinicians working for the hospital trust means that patients are able to directly benefit from the findings of our studies and we are delighted that this partnership is being officially recognised by the Paget’s Association.”
Paget’s Disease disrupts the skeleton’s normal cycle of renewal and repair, leading to bones becoming, weakened, and deformed at specific sites.
Bone pain in the most common symptom, often affecting the pelvis or spine. However, in many cases, there are no noticeable symptoms and it is only diagnosed during tests for other unrelated medical conditions or following a fracture.
Scientists still don’t know what causes Paget’s but it is likely to be a combination of genetic and environmental factors.
In about 10 to 15 per cent of cases, Paget’s disease runs in families and if you have a close relative with the condition you are seven to eight times more likely to develop the condition. People who inherit certain mutated genes from their parents have a greatly increased risk of developing Paget’s in later life.
In the last 50 years, the number of people affected by Paget’s Disease in the UK has fallen sharply, unlike in other countries where diagnosis rates have remained steady, suggesting that environmental factors also play an important role.
Treatment includes bisphosphonates to help regulate bone growth, medication to relieve pain, physical therapy and, in serious cases, surgery.
Dr Layfield said: “Paget’s is a real medical oddity. In genetic cases, the mutated gene is present throughout the skeleton – despite that, it only presents itself in around one or two places around the body. It doesn’t spread and it doesn’t change over time.
“Despite being the most common bone disorder after osteoporosis, it’s a relatively unknown disease and often GPs struggle to recognise the symptoms, meaning that diagnosis can be challenging.”
Research into Paget’s Disease at the University includes a study of 130 medieval skeletons excavated from Norton Priory in the North West. The discovery is puzzling because 20 per cent of the skeletons unearthed are affected by Paget’s which statistically should be closer to 2 per cent. Those with Paget’s were also severely afflicted - unusually, they exhibited signs of the disease at as many as 15 to 20 points around the skeletons rather than just the usual one or two sites.
The researchers are working on the project, funded by the Wellcome Trust, with experts from Leicester University who conducted DNA analysis on the skeletal remains of King Richard III. They believe the skeletons may have all been part of the same noble family which patronised the monastery and the genetic link may be a clue as to the high incidence and severity.
The researchers are also providing scientific support on a separate clinical trial - ZiPP (Zoledronate in Prevention of Paget’s disease) - which is identifying people with a genetic profile that puts them most at risk of developing Paget’s Disease and administering treatment before symptoms appear in the hope of slowing the onset of the disease.
Dr Peter Prinsloo, Consultant Chemical Pathologist at Nottingham University Hospitals NHS Trust, said: “We are very honoured to receive this award. The current service owes a great debt to our predecessor, Professor David Hosking who developed the Nottingham service into a nationally recognised centre for the management of Paget’s disease. This award and our collaboration with The University of Nottingham would further encourage us to continue delivering a Paget’s disease service of the highest quality to our patients.
Nottingham will become a Paget’s Disease Centre of Excellence on Wednesday January 27 at a special event being held in the University’s School of Life Sciences, which will feature the unveiling of a commemorative plaque and a programme of expert speakers.
Professor Roger Francis, Chair of the Paget's Association said: “I am delighted that The University of Nottingham and Nottingham University Hospitals NHS Trust have been jointly recognised as a Centre of Excellence for treatment and research into Paget's disease.
“The Paget's Association is keen to foster close collaboration between clinicians treating the disorder and scientists investigating the causes and potential new treatments. Nottingham is a good example of such collaboration, with the excellent clinical service developed by Professor David Hosking, now run by Dr Peter Prinsloo, and the pioneering work of Dr Robert Layfield investigating the underlying mechanisms of Paget's disease and their modification.”
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Notes to editors: The University of Nottingham has 43,000 students and is ‘the nearest Britain has to a truly global university, with a “distinct” approach to internationalisation, which rests on those full-scale campuses in China and Malaysia, as well as a large presence in its home city.’ (Times Good University Guide 2016). It is also one of the most popular universities in the UK among graduate employers and the winner of ‘Outstanding Support for Early Career Researchers’ at the Times Higher Education Awards 2015. It is ranked in the world’s top 75 by the QS World University Rankings 2015/16, and 8th in the UK by research power according to the Research Excellence Framework 2014. It has been voted the world’s greenest campus for three years running, according to Greenmetrics Ranking of World Universities.
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