Paget's Association Centres of Excellence

Director: Dr Nicky Peel - Clinical Lead and Consultant in Metabolic Bone Medicine, Sheffield Teaching Hospitals NHS Foundation Trust
Sheffield Teaching Hospitals NHS Foundation Trusts Metabolic Bone Centre has been awarded ‘Centre of Excellence’ as an exemplar facility for patients with Paget’s disease. The Metabolic Bone Service in Sheffield is based in a purpose-designed unit at the Northern General Hospital. The service has strong links with relevant specialties both within the Musculoskeletal Care Group (including orthopaedics, pain management services & therapy services) and across the Trust (e.g. clinical chemistry & audiology). The service also integrates closely with the University of Sheffield’s Academic Unit of Bone Metabolism, allowing the research agenda to be strongly influenced by the needs of patients, and for innovative treatments and techniques to be rapidly introduced into clinical practice for patient benefit. Over 150 patients with Paget’s disease are managed through the consultant-led clinics and by the nurse specialist team who also provide a telephone helpline and patient education. Biochemical markers of bone turnover have been used routinely in the service for over 15 years, helping to determine the response to treatment. Patients requiring intravenous bisphosphonate therapy are treated within the unit in a nurse-led day-case facility. A recent development has been the introduction of a follow-up register for patients with stable Paget’s disease. This involves an annual “virtual” review with a questionnaire posted to the patient about their symptoms and blood tests undertaken in primary care. A report is sent to the patient and their GP with any management recommendations and any patients with clinical changes are reviewed in clinic. This initiative allows systematic monitoring with a minimum number of visits to the hospital, supporting the NHS goals of providing treatment in the community and empowering patients’ involvement in their disease management. An evaluation of the outcome of this initiative both in terms of disease control and patient satisfaction is planned over the next five years.

Dr Nicola Peel, Clinical Lead and Consultant in Metabolic Bone Medicine at Sheffield Teaching Hospitals NHS Foundation Trust said: “We are delighted to have been awarded Centre of Excellence status by the Paget’s Association. Not only does this reflect the high standard of care provided to patients in Sheffield with Pagets’ disease but it also recognises the role played by researchers in the city who were instrumental in developing the treatments now used worldwide to manage this condition.”

Part of the team:
Professor Richard Eastell
Professor Eugene McCloskey
Professor Mark Wilkinson
Dr Jennifer Walsh

Website: Metabolic Bone Centre - www.sth.nhs.uk

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Director: Dr Mike Stone - Consultant Physician (specialising in Care of the Elderly) and Director of Bone Research Unit

Established in 1992, the Cardiff Metabolic Bone Disease service has a long and proud tradition of assessing and treating patients with Paget's disease. Dr Mike Stone and his team participated in the original oral risedronate and intravenous zoledronic acid studies and were quick to adopt better treatments for patients as soon as they became available. A dedicated nurse led infusion service followed, and close ties with other research and clinical departments has enabled the service to flourish.

Facilities: Outpatient clinics at University Hospital Llandough and Cardiff Royal Infirmary
Specialist nurses run a dedicated Infusion Clinic at the Cardiff Royal Infirmary
Clinical bone research unit at Llandough Hospital

Addresses:

Cardiff Royal Infirmary, Glossop Terrace, Cardiff, CF24 0SZ
University Hospital Llandough, Penlan Road, Llandough, CF64 2XX

Link: Cardiff and Vale University Health Board, NHS Wales - www.cardiffandvaleuhb.wales.nhs.uk

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Western General Hospital and the University of Edinburgh
Director: Professor Stuart H Ralston, Honorary consultant rheumatologist and director of the Edinburgh Clinical Trials Unit
Associate director: Dr Omar M E Albagha - Reader in Genetics and functional genomics

The director of the Edinburgh centre, Professor Stuart H Ralston, has conducted world-leading research into the causes and treatment of Paget’s diseases over the past three decades. Researchers in the centre have led the way in evaluating treatment strategies for Paget’s disease with a particular focus on studying how the currently available treatments affect pain, complications such as broken bones (fractures) and quality of life. The Edinburgh researchers have also played a world leading role in identifying the genes that predispose to Paget’s disease through the work of associate director Dr Omar Albagha. In addition to conducting research into Paget’s disease, clinicians within the centre (Prof Ralston and Dr Philip Riches) also provide services for the evaluation, diagnosis and treatment of Paget’s disease for patients within the Lothian region and other regions of the UK.

An important focus of the centre’s research is to find out more about the genes that cause Paget’s disease and explore the use of genetic testing to identify people at risk of developing the condition. The long term aim of this programme is to develop methods of accurately assessing disease risk in patients with a family history of the condition so that the diagnosis can be made at an early stage and the appropriate treatment given at the correct time. The Edinburgh researchers are already evaluating the effectiveness of this “personalised medicine” approach by conducting an international trial called the ZIPP study to determine if it is possible to prevent the development and progression of Paget’s disease by testing for abnormalities in the SQSTM1 gene and by investigating the effects of treatment in gene carriers. This study is being co-ordinated by Edinburgh Clinical Trials Unit. Future aims of the centre are to extend this program of research and to find out more about the mechanism by which genetic and environmental factors such as diet and exercise cause Paget’s disease.

Research within the centre is funded by various organisations including the Medical Research Council, Arthritis Research UK and the European Commission.

Location: Centre for Genomic and Experimental Medicine, Institute of Genetics and Molecular Medicine, University of Edinburgh, Western General Hospital, Edinburgh, EH4 2XU.

Links

Centre for Genomic and Experimental Medicine: www.cgem.ed.ac.uk
Edinburgh Clinical trials unit: www.clinicaltrials.ed.ac.uk
ZIPP study: http://www.controlled-trials.com/ISRCTN11616770

Western General Hospital: www.nhslothian.scot.nhs.uk

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Director: Professor Peter Selby - Consultant Physician and Honorary Clinical Professor of Metabolic Bone Disease

For many years Manchester Royal Infirmary (MRI) has been a major centre for the investigation and management of patients with metabolic bone diseases such as Paget’s disease. Patients are seen in dedicated bone clinics run by the department of medicine. MRI has a significant role for patients within the Manchester area and also attracts referrals from the North West as well as some international referrals. The NIHR (National Institute for Health Research), Manchester Clinical Research Facility is located on the MRI site and provides an ideal opportunity for clinical research supported by dedicated research staff.

The Team:

Dr H Soran, Consultant Physician 
Dr R Whitehouse, Consultant Musculoskeletal Radiologist 
Dr A Kirwadi, Consultant Musculoskeletal Radiologist 
Dr K Hayden, Consultant Clinical Biochemist 
Sr C Jagger, Specialist Nurse 
Sr N Komlosy, Specialist Nurse 

Link: Manchester Royal Infirmary - www.cmft.nhs.uk

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Director: Dr Terry Aspray - Consultant Physician and Honorary Clinical Senior Lecturer
Co-director: Dr Harish Datta - Senior Lecturer and Honorary Consultant Physician

The Newcastle Bone Clinic was established in 1984 by Professor Roger Francis who is currently Chairman of the Paget’s Association. The clinic is now led by Dr Terry Aspray at Freeman Hospital. It is an NHS England Specialised Centre for Rare Metabolic, Sclerosing and Dysplastic Bone Diseases with daily specialist clinics. Diagnostic services are supported by specialist musculoskeletal radiology, regional medical physics and Dr Harish Datta (co-Director) offers a strong link to Newcastle University and the hospital’s clinical biochemistry department. They have been major participants in clinical research into Paget’s disease, including collaboration with Edinburgh and other centres in the PRISM and ZIPP studies. The clinical team comprises medical and specialist nursing staff as well as a clinical pharmacist and physiotherapists. They also have a dedicated patient information hotline. For patients requiring parenteral therapy, there is a musculoskeletal day unit with daily infusion clinics, treating more than 600 patients per year. Their clinic database is a useful audit and clinical evaluation tool which allows clinicians to monitor the effectiveness of the treatment they offer.

Members of the team:

Sr Sharon Abdy: Specialist Nurse
Sr Clare Glennie: Specialist Nurse

Freeman Hospital: www.newcastle-hospitals.org.uk

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