Paget's Association Centres of Excellence
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What is a Paget's Association Centre of Excellence?
The Paget’s Association introduced an award to recognise hospital and university departments which demonstrate excellence in both the treatment of Paget’s disease and research into the condition. In this, the first ever award of its kind, ten UK centres have been recognised as Paget's Association Centres of Excellence. They are listed below.
Professor Roger Francis, Chairman of the Paget’s Association explains, “This initiative will ensure optimal management of patients and provision of services to patients and their carers, as well as encourage much-needed research. The initiative will hopefully increase awareness of the condition in health care professionals and the general public across the UK. Patients being referred to these Centres of Excellence should be reassured that they will receive the best possible care. It is anticipated that further Centres will be identified in due course, to allow easier access to specialist care right across the UK.”
Please scroll down for details of each centre.
- Cardiff and Llandough
Cardiff and Llandough Paget's Association Centre of Excellence
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
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
Centre address details:Cardiff Royal Infirmary
Edinburgh Paget's Association Centre of Excellence
Western General Hospital and 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.
Westren General Hospital: www.nhslothian.scot.nhs.uk
Centre address details:Centre for Genomic and Experimental Medicine, Institute of Genetics and Molecular Medicine
University of Edinburgh, Western General Hospital
Liverpool Paget's Association Centre of Excellence
Director: Dr Anna Daroszewska, Clinical Senior Lecturer in Musculoskeletal Biology, Honorary Consultant in Clinical Biochemistry & Metabolic Medicine and Rheumatology
Clinical Co-Director: Dr Eileen Marks, Consultant in Clinical Biochemistry & Metabolic Medicine, Divisional Medical Director for Core Clinical and Support Services, Associate Medical Director for Revalidation
Research Co-Director: Professor Rob van ’t Hof, Professor of Musculoskeletal Biology
The Department of Clinical Biochemistry and Metabolic Medicine (DCBMM) at the Royal Liverpool and Broadgreen University Hospitals Trust, together with the Bone Group, Institute of Ageing and Chronic Disease (IACD), University of Liverpool, have been awarded Centre of Excellence status by the Paget’s Association. This award recognises their outstanding reputation in clinical expertise in the management of Paget’s disease combined with significant research achievements in the understanding of the pathophysiology of the condition.
The metabolic bone diseases service at the Royal Liverpool University Hospital was established in the 1970-ies. The DCBMM is a tertiary referral centre for metabolic bone disorders in the North West and historically has treated a large number of patients with Paget’s disease due to its high incidence in the region, thus enabling the clinical team gain considerable experience and expertise in treating all aspects of Paget’s disease. Patients are seen in a number of specialist metabolic bone clinics at the Royal, and state-of-the-art technology, including isotope bone imaging and bone turnover markers, is routinely used in assessment of response to treatment. Zoledronic acid infusions are given on a dedicated day case ward.
The clinical department has strong links to the IACD, University of Liverpool, which is a member of the MRC-Arthritis Research UK Centre for Integrated Research into Musculoskeletal Ageing (CIMA), and has an active cutting-edge research programme into age-related metabolic bone disorders, both at a pre-clinical (laboratory) and clinical level.
Novel drug development and patient participation in clinical research are facilitated by the Clinical Research Unit at the Royal Liverpool University Hospital, which is accredited for Phase 1 clinical trials assessing the safety of new drugs or devices.
Members of the Clinical Team:
Dr Vinita Mishra, Consultant Chemical Pathologist
Dr Fadil Hannan, Clinical Senior Lecturer and Honorary Consultant Chemical Pathologist
Prof Lakshminarayan Ranganath, Consultant in Clinical Biochemistry & Metabolic Medicine, Director of the National Alkaptonuria Centre
Centre address details:Royal Liverpool University Hospital
Tel: 0151 7062000
Manchester Paget's Association Centre of Excellence
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.
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
Centre address details:Manchester Royal Infirmary
Middlesbrough Paget's Association Centre of Excellence
Director: Dr Stephen Tuck - Consultant Rheumatologist and Honorary Lecturer, Institute of Cellular Medicine, Newcastle University
The Middlesbrough Centre is based at James Cook University Hospital within the Department of Rheumatology. The Bone Clinic, with specialist treatment of metabolic bone disorders, has existed at James Cook hospital since 1992 and was founded by Dr Tuck's predecessor Dr John Fordham. Since taking over Dr Tuck has expanded the bone unit, which now includes a fracture liaison service and clinics for those with Paget's Disease of Bone, as well as other rare bone disorders. The input of a clinical biochemist in the form of Dr Pattman has been invaluable for the care of metabolic bone disorders. The unit has combined clinics with orthopaedics which allows the careful planning of the control of Paget's disease prior to undertaking orthopaedic procedures. The dedicated day case unit allows the administration of intravenous zoledronic acid by nurses familiar with the condition and the medications used to treat it. The unit provides a tertiary referral centre for complex cases from surrounding hospitals. The rheumatology department has outreach services to Northallerton, Whitby, Redcar, Guisborough and Broughton. Dr Tuck continues to be involved with the Paget's Association and aims to promote awareness of the condition. The unit remains involved in research having taken part in the recent ZIPP study. Dr Tuck is currently chairing the committee responsible for the production of UK Guidelines for the Management of Paget's Disease. It is hoped that the unit can be an integral part of further research and in linking with the other centres of excellence.
Part of the team:
Dr. Michael James Plant, Consultant Rheumatologist and Clinical Director of the Department of Rheumatology,
Dr. Stewart John Pattman, Consultant Chemical Pathologist, Department of Pathology
Link: James Cook University Hospital - http://southtees.nhs.uk/services/rheumatology/
Centre address details:Department of Rheumatology, James Cook University Hospital
- Newcastle upon Tyne
Newcastle upon Tyne Paget's Association Centre Of Excellence
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
Centre address details:Freeman Hosiptal
Newcastle upon Tyne
The Norfolk and Norwich Paget's Association Centre of Excellence
Director: Professor Bill Fraser - Consultant Metabolic Physician at the Norfolk and Norwich University Hospital. Director of The Norfolk Bone and Joint Centre, the Bioanalytical Facility and Head of Department of Medicine at Norwich Medical School.
Co-Directors: Dr Jeremy Turner, Consultant Endocrinologist and Dr Tarnya Marshall, Consultant Rheumatologist
The Norfolk and Norwich University Hospital has a well-established metabolic bone disease service. Patients are seen at specialist bone clinics, with a minimum of 3 clinics weekly. There is strong collaboration with scientists at University of East Anglia who research bone and joint disease. The centre also hosts a service which provides specialist tests and advice on interpretation of molecules involved in bone and calcium metabolism to units throughout the UK and for several in Europe (The Supra Regional Assay and Advisory Service - the only fully accredited service in the UK). Strong links exist with consultants at other major hospitals, such as the James Paget Hospital, Great Yarmouth, who also deal with metabolic bone disease.
Norfolk and Norwich University Hospital - www.nnuh.nhs.uk
The Bioanalytical Facility is situated within the Bob Champion Research and Education building at the University of East Anglia - www.uea.ac.uk
Centre address details:Norfolk and Norwich University Hospitals NHS Foundation Trust
Nottingham Paget's Association Centre of Excellence
Directors: Dr Peter Prinsloo at Nottingham City Hospital, in collaboration with Professor Rob Layfield’s research programme at the University of Nottingham.
The Nottingham Paget's Association Centre of Excellence combines expertise in basic research of Paget’s disease molecular mechanisms (Prof Layfield, Prof Searle) with clinical expertise in the management of Paget’s patients (Dr Prinsloo, Dr Divyateja). Our vision is to integrate local basic and clinical studies, with the synergy offering real advantages to both teams as well as in the longer term serving Paget's patients in the Midlands much better. Focus will include clinical improvement projects to develop better patient databases, as well as working closely with the Paget’s Association on a new project funded by the Wellcome Trust which will try and understand the extraordinarily high incidence of Paget’s identified in remains dating back to the 13-15th century found at Norton Priory in Cheshire.
Nottingham City Hosiptal - www.nuh.nhs.uk
University of Nottingham - www.nottingham.ac.uk
Centre address details:Nottingham City Hosiptal
Salford Paget's Association Centre of Excellence
Director: Professor Terry O’Neill - Professor of Rheumatology & Clinical Epidemiology, University of Manchester & Honorary Consultant Rheumatologist, Salford Royal NHS Foundation Trust
The Paget’s disease service at Salford Royal Hospital NHS Foundation Trust was established in the early 1980’s by Professor David Anderson. The service is currently led by Professor Terry O’Neill, and based within the Department of Rheumatology. It is supported by a multidisciplinary team including a specialist nurse, physiotherapists and occupational therapists. There is also close collaboration with other relevant clinical specialties including radiology and orthopaedics. Patients referred to Salford Royal Hospital NHS Foundation Trust are seen at dedicated outpatient clinics with access to diagnostic investigations on site. Since its establishment the service has worked closely with the Paget’s Association, which is based in the Salford area, and which provides support and information about the disease for those affected.
Members of the team:
Dr Jonathan Harris, Consultant Radiologist
Helen Atkinson, Specialist Nurse
Centre address details:Salford Royal NHS Foundation Trust
Sheffield Paget's Association Centre 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
Centre address details:Metabolic Bone Centre, Northern General Hospital
Southampton Paget's Association Centre of Excellence
Director: Professor Cyrus Cooper, Professor of Rheumatology and Director of the Medical Research Council (MRC) Lifecourse Epidemiology Unit. Together with Professor Cooper, rheumatologists Professors Elaine Dennison and Nicholas Harvey run the metabolic bone service at the University Hospitals Trust in Southampton. The metabolic bone clinic provides services for the diagnosis, investigation and management of conditions including Paget’s Disease.
The clinic has access to a full range of support services including an infusion unit which is located in Victoria House, where intravenous zoledronate is administered on an outpatient basis.
Close working relationships with radiological colleagues ensure access to radiography and isotope bone scanning where appropriate, and bone turnover markers are readily available, in addition to standard pathology testing.
The clinic is closely connected with an academic programme led by Professor Cyrus Cooper at the MRC Lifecourse Epidemiology Unit, which has maintained an active research interest in Paget’s disease for many years. Professor Cooper gives plenary lectures on Paget’s disease at meetings in the UK, Europe, North America and worldwide.
A meeting for Paget’s patients together with the presentation of the Paget's Association Centre of Excellence award will be held at the Medical Research Council Lifecourse Epidemiology Unit, Southampton General Hospital in 2018 - date to be confirmed. You are invited to register your interest in attending by emailing Professor Elaine Dennison at [email protected] or ringing 02380777624.
Centre address details:Southampton General Hospital
Tel: 023 8077 7222
Stanmore Paget's Association Centre of Excellence
Director: Dr Richard Keen - Consultant Rheumatologist and Honorary Senior Lecturer in Metabolic Bone Diseases
The Metabolic Bone Unit within the Royal National Orthopaedic Hospital, Stanmore has, since 1975, provided a clinical service to patients from the North Central London NHS Sector and also offers a specialist referral service for patients nationally. Lord Trevor Stamp, Patron of the Paget’s Association, was director of the unit until his retirement in 1999. Patients are seen both at the main hospital base in Stanmore and also at the central London department in Bolsover Street.
Link: Royal National Orthopaedic Hospital: www.rnoh.nhs.uk
Centre address details:The Metabolic Bone Unit, Royal National Orthopaedic Hospital