Steering Committee
The committee is responsible for reviewing all requests for data from the Central Recruitment Database.
List of Steering Committee members
Dr Michela Guglieri (Chairperson)
Dr Guglieri is a Senior Clinical Lecturer and Neuromuscular Consultant at Newcastle University. She leads the clinical research team which is currently involved in over 30 studies over the past 5 years. Duchenne UK collaborated with 5 patient organisations to award a 5-year lectureship to Dr Guglieri in 2015.
Emma Heslop
Emma Heslop is the DMD Hub manager and is funded by Duchenne UK. She has been part of the John Walton Muscular Dystrophy Research Centre at Newcastle University since October 2006, when she joined the TREAT-NMD Neuromuscular network of excellence.
Dr Pietro Riguzzi
Dr Riguzzi is a neurologist and PhD student in Clinical and Translational Neurosciences at the University of Padova. He has recently joined the muscle team at the John Walton Muscle Dystrophy Research Centre as a PhD fellow and Clinical Research Associate. He is deeply interested in dystrophinopathies and aims to make significant contributions to this field.
Suzanne Glover
Suzanne Glover is the Research Officer for Pathfinders. She lives in a small town in Northern Ireland with her husband, Colin and their Greyhound, Edith. Suzanne completed her PhD in March 2021 which looked at resilience in those who care for someone with Duchenne Muscular Dystrophy. Her current project in Pathfinders is researching transition to adulthood for young men with DMD. Suzanne enjoys getting out and about with Colin and Edith for walks, particularly around National Trust properties. She is also a massive fan of tea drinking!
Professor Tracey Willis
Professor Willis is a paediatric neurologist, specialising in neuromuscular conditions. She is the clinical lead in Neuromuscular disorders at Robert Jones and Agnes Hunt orthopaedic hospital and Birmingham children’s hospital and Visiting Professor (awarded 2018) for Chester and Shrewsbury University, contributing to the master’s courses particularly in medical genetics. She is chair of the UK Muscle Interest group and West Midlands Neuromuscular Network and is a board member for the BMS and BPNA. Professor Willis is an active contributor to the Northstar and SMA REACH databases, leading on the palliative care aspect of standards of care and developed an e-learning tool for palliative care for physicians on Neuromuscular conditions and a chapter in a recent book on neuromuscular emergencies. She is on the steering committee for the FSHD registry and founder member for FSHD UK.
Dr Maria Elena Farrugia
Dr Farrugia graduated in Medicine and Surgery from University of Malta in 1995. She then moved to the UK in 1997 where she first undertook training in postgraduate medicine, then specialist training in Neurology in Aberdeen Royal Infirmary, Aberdeen, Ninewells Hospital, Dundee and at the Institute of Neurological Sciences in Glasgow. She trained in neuromuscular disorders at the Muscle & Nerve centre in Oxford (from 2002 -2004) under the supervision of the late Professor John Newsom-Davis, and Professor Angela Vincent and Dr David Hilton Jones. She graduated in DPhil (University of Oxford) in 2005. The research work undertaken during the DPhil was based on the clinical (including neurophysiological and radiological) features of MuSK antibody positive myasthenia gravis and laboratory-based characteristics of MuSK antibody positive serum. She took up a Consultant Neurologist post at the Queen Elizabeth University Hospital Glasgow in 2007. Dr Farrugia set up the myasthenia gravis service for the West of Scotland in 2007 and has been a lead clinician for myasthenia gravis since 2007 and for adult muscle disorders since 2015.
Professor Ros Quinlivan
Ros Quinlivan obtained a BSc in psychology before going onto to study medicine at UCL. Her post-graduate training was in paediatrics at London Teaching Hospitals. She was the first clinical research fellow in neuromuscular disease at Guy's Hospital, working across paediatric and adult specialties. She was awarded an MD by the University of London for her research into the cardiomyopathy of Duchenne and Becker Muscular Dystrophy. She was appointed a consultant in 1995 in the West Midlands, where she was director of the Wolfson Centre For Inherited Neuromuscular Disease.
She moved to UCLH in 2010, where she leads the transition service for adolescents and young adults with neuromuscular disease at GOSH and Queen Square and is clinical lead for the nationally commissioned service for McArdle disease and related disorders. She is joint co-ordinating editor for the Cochrane Neuromuscular Disease Group.