The John Walton Muscular Dystrophy Research Centre at the International Centre for Life is one of three centres in England for the diagnosis and management of inherited muscle disorders.
The muscle team runs clinics for children and adults throughout the North of England. The main clinic base for adults is the Northern Genetics Service at the International Centre for Life. For children, the main clinic base is The Great North Children’s Hospital at the Royal Victoria Infirmary in Newcastle. The clinics are also held at other locations in the region.
A service for acquired neuromuscular conditions is also delivered through The Newcastle upon Tyne Hospitals NHS Trust.
The John Walton Muscular Dystrophy Research Centre also hosts the national LGMD diagnostic and advisory service to people from across the country.
How to access the service
A patient can be referred for treatment in the centre by a Physiotherapist, occupational therapist, GP, consultant, specialist nurse or a care advisor.
The team
Professor Volker Straub
Neurologist
Professor Volker Straub is the Harold Macmillan Professor of Medicine and Consultant in Neuromuscular Genetics and Paediatrics. He was founding joint co-ordinator of TREAT-NMD, and is an executive board member of the World Muscle Society and Research and Development Director of the North Tees and Hartlepool NHS Foundation Trust. Professor Straub has a long-standing interest in the pathogenesis of muscular dystrophies.
Dr James Miller
Consultant Neurologist
Dr James Miller has a specialist interest in neuromuscular disease and in particular acquired and immune-mediated disorders including myositis, CIDP and myasthenia gravis. Dr. Miller has established specialist multidisciplinary clinics for patients with dermatomyositis and with paraprotein related neuropathies.
Dr Chiara Marini-Bettolo
Consultant Neurologist
Dr Chiara Marini-Bettolo joined the Newcastle neuromuscular team in 2014 and see's patients with muscle-wasting conditions in clinic. Dr Marini-Bettolo also chairs the Northern England Neuromuscular Clinical Network, aiming to improve care and support for people with muscle-wasting conditions in the region.
Professor Jordi Díaz-Manera
Professor of Neuromuscular Disorders
Professor Jordi Díaz-Manera is the Professor of Neuromuscular Disorders and Honorary Consultant Clinical Geneticist at the Newcastle Hospitals NHS Foundation Trust. He has a long-standing experience in translational clinical and basic research.
Dr Michela Guglieri
Consultant Neurologist
Michela Guglieri, MD is a Senior Clinical Lecturer and Consultant Neurologist at the University of Newcastle and Newcastle Hospitals NHS Foundation Trust. Michela has a specific interest in care, management, and translational research in inherited neuromuscular disorders. Michela is a study chair for two large international trials in Duchenne muscular dystrophy
Other key people in the team include:
- Giorgio Tasca, Clinical Professor of Neuromuscular Science
- Dr Anna Mayhew, Consultant Research Physiotherapist
- Robert Muni Lofra, Consultant Physiotherapist
- Michelle McCallum, Physiotherapist
- Louise Hastings, Genetic Specialist Nurse
- Gail Eglon, Specialist Nurse
- Joe Mason, Specialist Neuromuscular Care Advisor
- Dr Lorraine Cowley, Principal Genetic Counsellor
- Sharon McDonnell, Principal Genetic Counsellor
Clinics
Adult
Clinics are held at the International Centre for Life in Newcastle, James Cook University Hospital, Middlesbrough and the Central Clinic Carlisle.
- Inherited muscle disease (including national for LGMD)
- Mitochondrial disease (some national services)
- Specialised nurse led myotonic dystrophy clinics with cardiology input
- Congenital myasthenia
- Inherited peripheral neuropathy
- Acquired neuropathy
- Inflammatory muscle disease
- Orthotics
- Dedicated neuromuscular cardiology
- Access to respiratory, gastroenterological, orthopaedic clinics with close liaison with NMD team as appropriate
Children
Clinics are held at the Great North Children’s Hospital at the Royal Victoria Infirmary in Newcastle, Carlisle, Whitehaven, Stockton, Hartlepool and Sunderland
Clinics are held at Newcastle, Carlisle, Whitehaven, Stockton, Hartlepool and Sunderland
- Fast track assessment of suspected Duchenne muscular dystrophy or spinal muscular atrophy type 1/2
- Inherited muscle disease(including national referrals for LGMD and others)
- Congenital myasthenia
- Inherited peripheral neuropathy
- Inflammatory muscle disease
- Mitochondrial disease
- Arthrogryposis
- Orthotics
- Dedicated neuromuscular cardiology
- Access to respiratory, gastroenterological, orthopaedic clinics with close liaison with NMD team as appropriate