National Centre of Research Excellence in Neuromuscular Disorders

A national team of researchers – including chairs of the Steering Committees of the Australasian Neuromuscular Network – have recently been awarded funding by the National Health and Medical Research Council to establish a Centre of Research Excellence in Neuromuscular Disorders (CRE-NMD). Advancing the diagnosis and treatment of patients with neuromuscular disorders requires a multicentre, multidisciplinary approach to research and translation, and significant collaboration between researchers, clinicians and patient organisations, nationally and internationally. The research to be performed as part of the new CRE-NMD is designed to achieve this.

The Centre’s research program will translate ‘best evidence’ from clinical and laboratory-based research into ‘best clinical practice’ under two themes of diagnosis and treatment. The CRE-NMD will instigate a national collaborative diagnostic network involving multidisciplinary clinics and diagnostic laboratories servicing all Australian states and territories, to ensure that all patients have access to an accurate genetic diagnosis to inform prevention through prenatal diagnosis and to guide prognosis and surveillance.

The CRE-NMD will investigate prevention strategies built on population screening methods and build a coordinated clinical trials program, so that potential new treatments developed in Australia and overseas will be quickly accessible to all individuals regardless of where in Australia they live. It will also develop a nationally integrated training program for future clinical and laboratory research leaders.

The CRE-NMD will aim to build a critical mass within Australia in all areas of basic and clinical research in neuromuscular disorders. The CRE-NMD will also benefit from and contribute to international partnerships with groups such as TREAT-NMD, providing access to clinical trials and research collaborations. These partnerships will also provide training opportunities for young clinicians and researchers.

The  established Australasian Neuromuscular Network (ANN) will underpin the successful translation of clinical and research outcomes from the CRE-NMD into practice, within a unified and coordinated framework. ANN members will be invited to participate in research and clinical projects and will be kept informed of the latest information through the ANN website and regular e-newsletters. The enhanced research and communication linkages established through the CRE-NMD will be available to ANN members to facilitate further collaborative research.

Chief Investigators

Prof Kathryn North Paediatric Neurogeneticist, Associate Dean and Head, Discipline of Paediatrics and Child Health, Faculty of Medicine, The University of Sydney / Head, Institute for Neuroscience and Muscle Research (INMR), The Children’s Hospital at Westmead, Sydney, NSW

Prof Nigel Laing Professorial Fellow and Laboratory Head, Molecular Genetics, Centre for Medical Research, University of Western Australia, Western Australian Institute for Medical Research, Perth; University of Western Australia, Western Australian Institute for Medical Research and PathWest Neurogenetic Laboratory, Royal Perth Hospital

A/Prof Andrew Kornberg Paediatric Neurologist and Head, Children’s Neurosciences Centre, Royal Children’s Hospital and the National Muscular Dystrophy Centre, Melbourne, VIC

A/Prof Joshua Burns NHMRC Fellow, Faculty of Health Sciences, The University of Sydney / Head, Clinical Research, INMR / Director, Paediatric Gait Analysis Service of NSW, Sydney Children’s Hospitals Network, NSW

A/Prof Monique Ryan Paediatric Neurologist and Head, Neuromuscular Service, Royal Children’s Hospital Melbourne, VIC

Prof Alastair Corbett Neurologist and Head, Neurology Department, Concord Hospital, University of Sydney/Medical Director, Muscular Dystrophy Association of NSW, Sydney, NSW

Prof Kathryn Refshauge Chair of Physiotherapy, Deputy Dean (Research and Innovation), Faculty of Health Sciences, The University of Sydney, Sydney, NSW

Dr Michael Buckley Molecular Geneticist and Head, South East Area Laboratory Service, Prince of Wales Hospital and Sydney Children’s Hospital, University of New South Wales, Sydney, NSW

Prof Catriona McLean Professor of Anatomical Pathology, Monash University, Director of Anatomical Pathology, the Alfred Hospital, Director State Neuropathology Service, Melbourne, VIC

Associate Investigators

Prof Steve Wilton Australian Neuromuscular Research Institute, Perth

A/Prof Phillipa Lamont Head, Neurogenetics Service, Royal Perth Hospital, Perth

Dr Kristi Jones Medical Director, Neuromuscular Service, The Children’s Hospital at Westmead

Prof Nadia Rosenthal Director, Australian Regenerative Medicine Institute, Melbourne

Prof Peter Currie Deputy Director and Head, Regenerative Biology Unit, Australian Regenerative Medicine Institute, Melbourne

Prof Garth Nicholson Molecular Medicine Laboratory, Concord Hospital, Sydney

Hugh Dawkins Curator for the Australian National DMD Registry, Office of Population Health Genomics, Public Health Division, Department of Health, Perth; Australian representative, TREAT-NMD Global Database Oversight Committee (TGDOC)

Mr Phil Martin CEO, Muscular Dystrophy Foundation