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Neurodisability and Rehabilitation

Approximately 7.6% of all Australian children have a disability.  These disabilities include intellectual disability, cerebral palsy, spina bifida, acquired brain injury, visual or hearing impairment, autism spectrum disorder, and rare genetic conditions such as tuberous sclerosis. 

The Neurodisability and Rehabilitation Group at Murdoch Children’s Research Institute is focused on helping these children and their families by gaining an improved understanding of the causes of childhood disabilities, by optimising interventions and by implementing evidence based interventions into care and support. 

The ultimate goal is to prevent or minimise disabilities where possible, and to improve health, well-being and quality of life for children with disabilities and their families.

Our team has a strong track record of research in disability, and collaborates nationally and internationally. We work closely with the Department of Neurodevelopment and Disability at the Royal Children’s Hospital, the Victorian Paediatric Rehabilitation Service, and with the Department of Paediatrics at the University of Melbourne. Neurodisability and Rehabilitation currently includes approximately 80 paid and honorary staff. 

Neurodisability and Rehabilitation research has five main research streams:

Cerebral palsy & physical disability
Through our program of cerebral palsy research we aim to improve the way cerebral palsy is understood, detected and managed, and offer better support to children with a disability and their families. 

Our clinical research is focused on better approaches to preventing and detecting cerebral palsy early and on identifying effective interventions. Through a combination of clinical trials, systematic reviews, cohort studies and cross sectional studies we are working on improving the identification and management of movement disorders, pain, displaced hips, drooling and other co-morbidities associated with cerebral palsy. We have a strong knowledge translation focus and our close links to clinical care ensure evidence is taken up into clinical care and practice.

Recently we have started looking at outcomes for adolescents and young adults, through several projects that focus on identifying ways to improve social, cognitive and behavioural outcomes to enable young adults to live a healthy life. A large part of our work focuses on supporting the mental health of parents and carers of children with a disability. 

Our group houses the Victorian Cerebral Palsy Register which collects information on people with cerebral palsy who were born or are living in Victoria. The Register was established in 1986 and is now one of the largest cerebral palsy registers in the world. Using the Register, we conduct ongoing research describing, monitoring, and reporting on cerebral palsy in Victoria and Australia, including prevalence, type, topography, and severity of the movement disorder, comorbidities, neuroimaging patterns, aetiological pathways, use of health services, and mortality. For more information about the Register, please visit the VCPR website. Our team also established and manages the Prader-Willi and Neural Tube Defects Registers. 

Autism & intellectual disability
Our autism research is organised into three streams: exploring causal pathways of autism, understanding the lifecourse in order to personalise interventions, and understanding the impact of autism in the community. 

Some of our studies focus on what causes loss of skills in autism, what the differences are between cases (particularly in twins) and understanding neurobiological pathways. We seek to increase our understanding of the impacts of gender, mental health and other co-morbidities, and track neurodevelopmental trajectories over time. We collect data to understand the incidence, prevalence and diagnostic trends for autism. 

Ultimately we aim to build our knowledge to enable personalised interventions, which can be delivered as part of care and support to improve health, well-being and quality of life for children with autism and their families.

Rehabilitation
Our rehabilitation research focuses largely on chronic fatigue syndrome, acquired brain injury and technology. 

Studies seek to understand chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME) in children and adolescents, including brain structure and function, school functioning and clinical outcomes. In acquired brain injury, our research aims to improve evidence-informed rehabilitation for children with acquired brain injury and develop evidence-based clinical standards. We incorporate the perspective of children and parents as well as clinicians.  

We are also excited about the benefits technology can bring to rehabilitation, and are adapting a general purpose social robot for paediatric rehabilitation through in-situ design.
    
Genetics of neurodevelopmental disability
Genetics of neurodisability research aims to improve the lives of children with neurodisability through improved diagnosis and treatment. The majority of neurodevelopmental disabilities have a genetic cause, yet even using the latest genetic testing technologies, a specific cause is identified in only 25% of affected children. Moreover, many new genetic tests are not routinely available. Knowing the genetic cause is a key entry point for treatment, prevention and improving clinical care. Our research focuses on identifying genetic causes for a range of neurodevelopmental disabilities including intellectual disability, cerebral palsy, brain malformations and autism. 

We are also actively involved in the translation of new genomic testing technologies into clinical care. 

Psychiatry & behaviour
Our research focuses on developing a better understanding of the pathophysiology and underlying causes of ADHD, irritability, conduct disorder and depression using a range of approaches including neuropsychopharmacology, neuroimaging and genetics. We are developing personalised approaches to the treatment of child and adolescent mental health problems through the use and study of biomarkers, neurocognitive phenotypes, clinical trials, pharmacoepidemiology and patient reported outcomes.

We also aim to develop clinical pathways that facilitate the rapid transfer of research evidence into routine clinical practice.

Group Leaders: 
Group Members: 

Cerebral Palsy

Research platforms

  1. The Victorian Cerebral Palsy Register (VCPR)
    The VCPR collects information on people with cerebral palsy who were born or lived in the Australian state of Victoria since 1970. The Register was founded by Professor Dinah Reddihough in 1986 and is now one of the largest cerebral palsy registers in the world. For more information about the VCPR and how to sign up, please visit the VCPR website.
     
  2. Centre of Research Excellence – Cerebral Palsy
    The Centre of Research Excellence in Cerebral Palsy is a five-year project funded by the National Health and Medical Research Council (NHMRC) that brings together leading researchers, clinicians and consumers from across Australia and the globe. The CRE aims to improve the physical, mental, social and emotional health and well-being of children with cerebral palsy and their families. For more information about the CRE-CP, please visit the CRE-CP website.

Key Projects

  • Improving understanding of MRI patterns, structure-function relationships and causal pathways in cerebral palsy
    This program focusses on improving understanding of patterns of injury on brain MRI scans, and relating these MRI findings to the type of cerebral palsy and the child’s level of function. The research program will go on to study causal pathways in subgroups of children with cerebral palsy based on their brain MRI findings.
  • Exploring the use of stem cells in cerebral palsy
    This project looks at options for testing cord blood stem cells as a therapy for CP in Australia. As part of a national collaboration, a small clinical trial focussing on safety of single dose intravenous cord blood cell infusion is in progress for children with CP who have their sibling’s cord blood in storage.

Autism Spectrum Disorder

Research Platform

  1. The Victorian Collaborative Autism Study Database (CATS)
    The CATS database was created by Dr Peter Hewson and continues today with the support of local paediatricians, the community and the families who have consented to be involved. The database contains information on over 500 children with ASD who reside in the Barwon region. Utilizing this information we are able to investigate a number of key research questions.

Key Projects

  • FAB Trial - Multi-site randomised controlled trial of Fluoxetine in children and adolescents with autism
    This NHMRC-funded multisite study aims to determine the efficacy and safety of fluoxetine for treating repetitive behaviours in children and adolescents with autism spectrum disorders. The study has finished recruiting, and is now in the follow-up phase. Results should be available early 2018.
  • Unique Autism: Understanding differences between twins
    This project studies genetically-identical twin pairs in which one or both twins has ASD. The research seeks to study in detail the role of epigenetics in twins with ASD. If only one of a pair of twins has ASD, it is possible that the difference most likely lies in the settings of their epigenetic gene switches.
  • Autism Spectrum Disorder: Smart Health Information Platform (SHIP)
    In collaboration with Deakin and Monash Universities, MCRI is developing an intelligent, web-based, user-sensitive autism SHIP to match user profiles with relevant resources. Going beyond existing SHIP technology, the project aims to develop and evaluate methods to support communication channels amongst small local teams, large professional groups and international collaborators and stakeholders.

Chronic Fatigue Syndrome

Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a debilitating and complex disorder characterised by profound, medically unexplained fatigue that is not improved by bed rest and may be worsened by physical or mental activity. Our comprehensive clinical research program aims to 1) better understand this condition and its progression, 2) evaluate interventions to effectively manage this condition and 3) embed evidence based practice into clinical care. Ultimately we want to improve the participation and quality of life of these adolescents.

Key projects

  • The incidence of CFS in Australian children and adolescents: an APSU study
  • Understanding CFS: a longitudinal study of fatigue, pain, sleep, school functioning, physical activity, emotional impact, family impact and quality of life
  • Actigraphy assessment of sleep in adolescents with CFS
  • The impact of mental exertion on brain structure and function in adolescents with CFS
  • CFS School Study: applying a multi-faceted framework of school functioning (school attendance, academic performance, school connectedness, school participation) to assessing school functioning in adolescents with CFS
  • iACT4ME: The feasibility and acceptability of a telehealth intervention in adolescents with chronic fatigue syndrome: A pilot randomised controlled trial

Prader-Willi Syndrome

Prader-Willi syndrome (PWS) is a neurogenetic condition. It is characterised by severe infantile hypotonia and failure to thrive at birth, delayed motor milestones, learning disabilities, short stature and development of hyperphagia (pathological over-eating) in early childhood, which continues throughout adulthood. 

  • The Victorian Prader-Willi Syndrome Register
    The Victorian Prader-Willi Syndrome Register collects longitudinal information about all individuals with PWS in Victoria. This helps to ensure accurate prevalence estimates of the syndrome, as well as document and understand the outcomes of this condition with the hope of reducing the morbidity associated with it. Families can consent to be included on the Register, allowing them to complete questionnaires about the person with PWS and to also have the option of participating in relevant research projects. The Victorian Prader-Willi Syndrome Register acts as a great resource for a wide range of PWS-specific research in Australia. 

Brain and Spinal Injuries and Disorders

1. Spina Bifida Projects:

  • Establishing a database to determine best practice for managing and preventing bladder and kidney disease in children with spina bifida 
  • Follow up study of young adults with spina bifida aged 18-25 years to determine what happens when they leave a paediatric institution

2. Acquired Brain Injury Projects:

  • An investigation of the effects of anosmia on children who have sustained traumatic brain injuries
  • Family focussed interventions to support family adaptation following paediatric brain injury
  • The use of virtual reality to improve motor function. 
  • Members of the rehabiltation team are also involved in a project developing measures of social function, and measures of high level mobility skills specific to children who have sustained brain injuries.
3. Spinal Cord Injury and Disease
A national study gathering perspectives from experts working in the field of spinal cord injury and paediatrics is underway. This study aims to identify what information is needed for research and clinical purposes in a paediatric spinal cord injury setting. Data collected will be used to inform the establishment of a national paediatric spinal cord injury database in Australia. 
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