Melbourne Children's Campus is a partnership between three institutions: The Royal Children's Hospital, The Murdoch Children's Research Institute and University of Melbourne.
The Royal Children’s Hospital (RCH) provides secondary and tertiary care to children and young people across the northern and western suburbs; specialist paediatric healthcare to the children of Victoria, Tasmania, southern NSW and parts of South Australia; and is the designated state-wide provider of services including paediatric trauma, rehabilitation and forensic medicine. As a quaternary centre for complex cardiac surgery and organ transplantation, the RCH cares for the sickest children from around Australia.
With a passionate, highly skilled and committed staff campus wide of over 6000, we provide a full range of clinical services, tertiary care and health promotion and prevention programs for children and young people.
The Murdoch Children's Research Institute (MCRI) is the largest child health research institute in Australia and one of the top three worldwide for research quality and impact*. Our team of more than 1200 talented researchers is dedicated to making discoveries to prevent and treat childhood conditions. Many of our researchers are also clinicians at the Royal Children’s Hospital in Melbourne, where the Institute is based. Their research is informed by the problems facing their patients but it also means when a discovery is made, this is quickly transformed into practical treatments for children in the hospital.
Our work goes beyond research. We are one of the only research institutes in Australia to offer genetic testing to find answers for families of children with previously undiagnosed conditions, using the latest genetic sequencing technology. We also conduct national newborn screening and allow children to access personalised treatments for conditions like cancer.
* According to the Clarivate Analytics Bibliometric Report 2017
The Neuromuscular Clinic at the Royal Children's hospital is one of the largest and busiest dedicated neuromuscular clinics in the Southern Hemisphere looking after more than 600 patients with nerve and muscle conditions. Our multidisciplinary clinic benefits from regular input from specialists including neurology, respiratory, orthopaedics, psychiatry, nursing, physiotherapy, occupational therapy, genetic counselling, dietician, social work, orthotics and speech pathology with close links with palliative care, cardiology and endocrinology as well.
The Neuromuscular Trials team have vast experience in running clinical trials having been involved in more than twenty international industry sponsored clinical and numerous local investigator-led trials. We have experience in trials in Duchenne Muscular Dystrophy (DMD), spinal muscular atrophy (SMA) and facioscapulohumeral dystrophy (FSHD) and have been involved with non-interventional studies in a number of other conditions including Charcot-Marie-Tooth-Disease (CMT), Limb-Girdle muscular dystrophies (LGMDs) and Myotonic Dystrophy. We have a large clinical trials team including three neurologists, three specialist nurses, four physiotherapists and two dieticians.
Department of Neurology
The Royal Children's Hospital
50 Flemington Road
Dr Ian Woodcock is a paediatric neurologist at the Royal Children’s Hospital, Melbourne and an honorary fellow at the Murdoch Children’s Research Institute. He completed his paediatric training including paediatric neurology terms at the Leeds Children’s Hospital in the United Kingdom before moving to Melbourne, Australia and completing a three and a half year fellowship training programme in paediatric neurology at the Royal Children’s Hospital. This fellowship included a double term as the neuromuscular fellow. Ian has extensive research interests within the field of paediatric neurology and in particular in neuromuscular disorders. Ian has experience as principle investigator in investigator initiated clinical trials including one in Duchenne Muscular Dystrophy and another for young people with facioscapulohumeral muscular dystrophy (FSHD). Ian has extensive experience as an investigator in multiple large-scale international industry-sponsored drug trials, including breakthrough drug trials in Spinal Muscular Atrophy.
Finkel RS, Mercuri E, Darras BT, Connolly AM, Kuntz NL, Kirschner J, Chiriboga CA, Saito K, Servais L, Tizzano E, Topaloglu H, Tulinius M, Montes J, Glanzman AM, Bishop K, Zhong ZJ, Gheuens S, Bennett CF, Schneider E, Farwell W, De Vivo DC; ENDEAR Study Group. Bradley WG… Ryan M, Carroll KM, De Valle KL, Villano D, Woodcock I, Yiu EM… Zeng YS. Nusinersen versus Sham Control in Infantile-Onset Spinal Muscular Atrophy. N Engl J Med. 2017 Nov 2;377(18):1723-1732. doi: 10.1056/NEJMoa1702752.
Butcher S, Smith M, Woodcock IR, Delatycki M, Ryan MM, Forbes R. False negative carrier screening in spinal muscular atrophy. Journal of Child Neurology. 2020;35(4):274-77
de Valle K, McGinley JL, Woodcock IR, Ryan MM, Dobson F. Measurement properties and utility of performance-based outcome measures of physical functioning in individuals with facioscapulohumeral dystrophy – a systematic review and evidence synthesis. Neuromuscular Disorders. 2019;29:881-94
Woodcock IR, Menezes MP, Coleman L, Yaplito-Lee J, Peters H, White SM, Stapleton R, Phelan DG, Chong B, Lunke S, Stark Z, Pitt J, Ryan MM, Robertson C, Yiu EM. Genetic, radiologic and clinical variability in Brown- Vialetto-van Laere Syndrome. Seminars in Pediatric Neurology. Available online 5 April 2017. https://doi.org/10.1016/j.spen.2017.03.001
Dr Eppie Yiu is a paediatric neurologist at the Royal Children’s Hospital Melbourne and an honorary fellow at the Murdoch Children’s Research Institute. She underwent training in paediatric neurology at The Royal Children's Hospital Melbourne and The Hospital for Sick Children in Toronto. She completed her PhD in 2013 in neurogenetic disorders, which included studies in Charcot-Marie-Tooth disease and an investigator-initiated trial Friedreich ataxia. She was awarded a NHMRC early career fellowship for her post doctoral studies, during which she lead development of international best practice guidelines for Charcot-Marie-Tooth disease. Eppie continues to have a special interest in neuromuscular disorders as well as demyelinating disorders such as multiple sclerosis. She has extensive experience an investigator in both investigator-initiated and industry-sponsored clinical drug trials in neuromuscular disorders and multiple sclerosis.
1. Kennerson ML*, Yiu EM*, Chuang DT, Kidambi A, Tso SC, Ly C, Chaudhry R, Drew AP, Rance G, Delatycki MB, Zuchner S, Ryan MM, Nicholson GA. A New Locus for X-linked Dominant Charcot Marie Tooth Disease (CMTX6) is Caused by Mutations in the Pyruvate Dehydrogenase Kinase Isoenzyme 3 (PDK3) Gene. Hum Mol Genet. 2013 Apr 1;22(7):1404-16. *co-first authors
2. Yiu EM, Brockley CR, Lee KJ, Carroll K, de Valle K, Kennedy R, Rao P, Delatycki MB, Ryan MM. Peripheral nerve ultrasound in pediatric Charcot-Marie-Tooth disease type 1A. Neurology. 2015 Feb 10;84(6):569-74.
3. Yiu EM, Tai G, Peverill RE, Lee KJ, Croft KD, Mori TA, Scheiber-Mojdehkar B, Sturm B, Praschberger M, Vogel AP, Rance G, Stephenson SE, Sarsero JP, Stockley C, Lee CY, Churchyard A, Evans-Galea MV, Ryan MM, Lockhart PJ, Corben LA, Delatycki MB. An open-label trial in Friedreich ataxia suggests clinical benefit with high-dose resveratrol, without effect on frataxin levels. J Neurol. 2015 May;262(5):1344-1353
4. Finkel RS, Mercuri E, Darras BT, Connolly AM, Kuntz NL, Kirschner J, Chiriboga CA, Saito K, Servais L, Tizzano E, Topaloglu H, Tulinius M, Montes J, Glanzman AM, Bishop K, Zhong ZJ, Gheuens S, Bennett CF, Schneider E, Farwell W, De Vivo DC; ENDEAR Study Group. Nusinersen versus Sham Control in Infantile-Onset Spinal Muscular Atrophy. N Engl J Med. 2017 Nov 2;377(18):1723-1732.
Ms Villano has been working as a paediatric nurse as part of the Children’s Neuroscience Centre since 2004. In 2007 she commenced her role as the nurse consultant working with patients and families affected by neuromuscular conditions. Her role encompasses overall coordination of the clinical research and clinical care program through the Royal Children’s Hospital Neuromuscular service.
Ms Villano is one of Australia’s leading neuromuscular nurses and is passionate about supporting patients and families in achieving the best quality of life and health outcomes.
Emma Scott is a Neuromuscular Research Nurse Coordinator at the Murdoch Children's Research Institute in Melbourne. In this role she coordinates the day to day running of the clinical trials and liaising with the participants, their families, as well as the various other stakeholders involved.
Emma's background is in Paediatric Neurology and she has worked in a wide variety of roles at Starship Children's Hospital in Auckland, NZ and Great Ormond Street Children's Hospital in London, UK. Emma holds a Bachelor of Nursing degree and a Post Graduate Diploma in Advanced Nursing from the University of Auckland.
Isobel Standley is a Neuromuscular Research Nurse Coordinator at the Murdoch Children's Research Institute in Melbourne. In this role she coordinates the day to day running of clinical trials and liaising with the participants, their families, as well as the various other stakeholders involved.
Isobel has been working as a paediatric nurse for seven years specialising in a range of areas including Neurology, Neurosurgery, Gastroenterology, Endocrinology, General Medicine, Developmental Medicine, Respiratory Medicine and Metabolic Medicine. During this time Isobel has gained experience as a Clinical Nurse Specialist and Nurse Coordinator. Isobel holds a Bachelor of Nursing degree from Flinders University and a Post Graduate Certificate in Nursing Practice (Paediatrics) from the University of Melbourne.
Sarah Catling Seyffer is a Neuromuscular Clinical Trials Nurse Coordinator at the Royal Children’s Hospital in Melbourne. She received her Bachelor of Science degree from the Monash University in Clayton in 2006 before completing her Master of Nursing Science at Melbourne University in 2010.
Sarah has been working as a paediatric nurse for more than ten years, specialising in a range of areas including Neurology, Adolescence, Gastroenterology, Respiratory, Oncology and Rehabilitation. During this time Sarah gained experience as a Clinical Nurse Specialist and then as an Associate Nurse Unit Manager of the Adolescent, Oncology and Rehabilitation Unit at the Royal Children’s Hospital. Sarah joined the Murdoch Children’s Research Institute as a Clinical Trials Nurse Coordinator with the Neuromuscular team in 2018. This position involves her collaborating with all members of study teams including principal investigators, sub-investigators, site staff, ethics committees and external stakeholders such as CRAs and project managers. Her role plays a valuable part in ensuring Good Clinical Practice is upheld in Neuromuscular Studies as well as in supporting and educating patients and their families.
Kate Carroll is a senior clinician physiotherapist who has spent the last 18 years based in the Neurology Department at the Royal Children’s Hospital, Melbourne as a researcher and clinician working with children who have neuromuscular disorders. Kate was a founding member of the RCH Neuromuscular Clinic. In 2008 she completed her PhD. Kate has worked on more than 30 research projects including international and domestic pharmaceutical trials and natural history studies as a clinical evaluator. She has initiated and undertaken local research projects together with other members of the RCH Neuromuscular Research Team, contributing to a number of publications. Kate is also the lecturer in paediatric physiotherapy at Monash University, Melbourne coordinating their postgraduate paediatric program.
Dr Rachel Kennedy (B.Physio, PhD) has worked as a physiotherapist for over 25 years with children, young people and their families; the last 15 years has included a clinical and research role in the Neuromuscular clinic and research team at The Royal Children’s Hospital, Melbourne, Australia. She holds a joint appointment with the Neurosciences research group at the Murdoch Children’s Research Institute, Melbourne, Australia. In this role, she has been involved in international studies, including for the Co-operative International Neuromuscular Research Group (CINRG) for boys with Duchenne muscular dystrophy (DMD) and industry-sponsored pharmaceutical trials for children with DMD and spinal muscular atrophy (SMA). Rachel completed her PhD studies investigating gait and functional ambulation in children and adolescents with Charcot-Marie-Tooth disease in 2018 and continues to investigate the utility of gait as a functional outcome measure in paediatric neuromuscular diseases. She is the recipient of a Winston Churchill Memorial Trust travel fellowship to investigate the implementation of exercise for children and young people with neuromuscular disease.
Katy de Valle started work in the Department of Physiotherapy at The Royal Children’s Hospital in Melbourne in 1998. She began her career working with children suffering acute and chronic neurological and respiratory conditions.
Katy moved to her current neuromuscular clinical research role in the Department of Neurology in 2005. She works within the Neuromuscular Research Team as a clinical evaluator on large international pharmaceutical research trials and natural history studies neuromuscular disorders such as DMD, SMA, CMT and FSHD.
She has also been involved in the design and implementation of local site specific research projects and is enrolled in a Doctor of Philosophy (PhD) through The University of Melbourne. Her PhD research project involves evaluation of outcome measures to measure physical functioning in children with facioscapulohumeral dystrophy (FSHD). She has presented much of her work both nationally and internationally. She is passionate about supporting children with neuromuscular diseases and their families in their bid to achieve a brighter future.
Justine is a physiotherapist who joined the Murdoch Children’s Research Institute in 2018. She works within the neuromuscular research team as a clinical evaluator on international pharmaceutical research trials for neuromuscular disorders such as DMD and SMA. She also represents physiotherapy at the weekly neuromuscular outpatient clinic at the Royal Children’s Hospital in Melbourne.
Prior to this, Justine has provided physiotherapy services to children of all ages in a variety of other settings including: RCH, Britain’s NHS, special developmental schools, community outreach programs and private practice. Earlier in her career, she worked with adults at the Austin hospital, focusing on acute chronic disease management.
Justine has a particular interest in supporting families and children, especially those with communication, sensory or behavioural challenges, to engage successfully with their hospital visits to attend clinic and participate in clinical research trials.
Chiara Tewierik is a Senior Neurosciences Physiotherapist at the Royal Children’s Hospital, Melbourne. She has worked with the Neuromuscular Population at RCH since 2005 and has a particular focus on Aquatic Physiotherapy treatment of Children with SMA.
Ashlee Cruz is a Senior Occupational Therapist at The Royal Children’s Hospital, Melbourne. Ashlee’s qualifications include a Bachelor in Occupational Therapy (LaTrobe University, 2009) and a Master of Advanced Occupational Therapy Practice (Monash University, 2019). Ashlee has worked across a variety of community and hospital based paediatric settings and has developed a passion and expertise in working with children and adolescents with neurological conditions, and in particular neuromuscular disorders. Ashlee completed a research study on the use of mobile arm supports in individuals with Duchenne Muscular Dystrophy in 2019 as part of her Masters.
Cruz, A., Callaway, L., Randall, M. & Ryan, M. (2020). Mobile arm supports in Duchenne muscular dystrophy: a pilot study of user experience and outcomes. Disability and Rehabilitation Assistive Technology, pp. 10-. doi:10.1080/17483107.2020.1749892
Dr Zoe Davidson is an Advanced Accredited Practising Dietitian specialising in paediatric nutrition. Her doctoral research focused on advancing the evidence base for the nutritional management of boys with Duchenne muscular dystrophy. A key component of this research was a randomised control trial investigating the use on nutriceuticals in Duchenne muscular dystrophy (DMD). In her postdoctoral research, Zoe has focused on managing obesity in DMD, energy expenditure and body composition in children with neuromuscular disorders and documenting best practice in allied health and nursing in DMD.