About the Steering Committee
The committee is responsible for reviewing all requests for data from the registry. This is intended to be a streamlined and rapid procedure in order not to delay approval. International requests will also be discussed with the TREAT-NMD Global Database Oversight Committee.
Dr David Hilton-Jones
John Radcliffe Hospital, Oxford
David Hilton-Jones established the Oxford Muscle Clinic in 1990 and now runs a multidisciplinary clinic covering all neuromuscular disorders. He has a particular interest in the muscular dystrophies, myotonic dystrophy and inclusion body myositis. Since the retirement of John Newsom-Davis he has led the Oxford Myasthenia Centre. He is involved in clinical research and collaborative laboratory research with colleagues worldwide. A long-standing view is that patients can contribute to the research effort, and that new discoveries can quickly be brought back to the clinic for the benefit of patients.
Dr Tracey Willis
Robert Jones and Agnes Hunt Orthopaedic Hospital, Oswestry
Tracey Willis is a Paediatric Neurologist with an interest in neuromuscular diseases. She completed her paediatric neurology training in Birmingham and since then has worked as a paediatric neurologist in Birmingham and Auckland, New Zealand. Between 2008 and 2012 she was the Muscular Dystrophy Campaign (MDC) fellow at the Institute of Human Genetics in Newcastle with Professor Straub and was involved in designing and setting up the Global FKRP registry for limb girdle muscular dystrophy 2I (LGMD2I), congenital muscular dystrophy (MDC1C) and other FKRP related disorders. Her work has also involved coordinating a multicentre MRI/MRS study in LGMD2I. Dr. Willis now works as the lead clinician at RJAH, Oswestry in the muscle service and is involved in the diagnosis and care of a broad spectrum of patients with neuromuscular diseases, including Pompe disease.
Dr Peter Lunt
National Genetics Education and Development Centre, Birmingham
Dr Peter Lunt has been actively involved with clinical and genetic research in FSHD since 1985-87, when he visited many UK families for gene mapping studies based in Cardiff. He helped initiate the now annual International genetic research meetings in FSHD, and helped develop molecular testing for FSHD in Bristol within the UK Genetic Testing Network, for whom he was Clinical Advisor from 2006-9. Having worked as a Consultant Clinical Geneticist in Bristol from 1989-2012, he is now Senior Advisor in Genetics at the National Genetics Education and Development Centre in Birmingham.
Muscular Dystrophy UK
Andrew has been involved with the Muscular Dystrophy UK for a number of years originally being Vice President and in 2010 became a Board Trustee and Treasurer. In leading a fundraising initiative on FSH, recognised the importance of patient registries as part of the preparation for Clinical Trials.
Dr Fiona Norwood
King’s college Hospital, London
Dr Fiona Norwood is a Consultant Neurologist and Honorary Senior Lecturer at King’s College Hospital in London. She runs a twice-weekly muscle clinic with multidisciplinary support from the regional muscle physiotherapist and patient advocate from the MDC. Her particular interest is in genetic muscle diseases including FSHD. Her research background is in biochemical studies of the dystrophin protein, work which she completed at Guy’s Hospital and the MRC Laboratory of Molecular Biology in Cambridge. She has worked and studied in several muscle centres in the UK and abroad and has been at King’s since 2005.
Dr. Richard Orrell
Institute of Neurology, University College London
Dr Richard Orrell is Senior Lecturer in Clinical Neuroscience at the Institute of Neurology, University College London. He is a Consultant Neurologist at the Royal Free Hospital London, the National Hospital for Neurology and Neurosurgery, and also sees patients at the QE2 Hospital, Welwyn Garden City.
Dr Orrell has a longstanding clinical and research interest in muscle disorders. He was particularly involved in genetic and clinical studies of Facioscapulohumeral Dystrophy following inspiration by Dr Berch Griggs, at the University of Rochester Medical Centre, New York, USA, where he spent one year as a Visiting Professor, supported by the Medical Research Council Travelling Fellowship Programme.
Dr Mark Roberts
Salford Royal Hospital, Manchester
Dr Mark Roberts is a Consultant Neurologist at the Greater Manchester Neurosciences Unit at Salford Royal NHS Foundation Trust. He has clinical interests in neuromuscular disease,and has worked with TREAT-NMD on a number of rare disease registries.
Muscular Dystrophy UK
Suzanne works closely with the MDC to support the work of the dedicated scientists in the UK and abroad searching for a cure for FSHD. Instrumental in the setup of the registry, she wants to see a cure in her children’s lifetime.
Muscular Dystrophy UK