Neurodisability and Rehabilitation Research
Prevent, minimise disabilities and improve health, well-being, and quality of life for children with disabilities.
Around 7.6% of Australian children live with a disability. These include conditions such as:
- Intellectual disability
- Cerebral palsy
- Spina bifida
- Acquired brain injury
- Visual or hearing impairments
- Autism spectrum disorder
- Rare genetic conditions
Our research focus
We aim to prevent or minimise disabilities, and to improve health, well-being, and quality of life for children with disabilities and their families
The Neurodisability and Rehabilitation group at Murdoch Children’s Research Institute (MCRI) is dedicated to:
- Understanding the causes of childhood disabilities
- Optimising and implementing evidence-based interventions into care and support
- Supporting families through improved care and outcomes
We collaborate closely with:
- The Department of Neurodevelopment and Disability at The Royal Children’s Hospital (RCH)
- The Victorian Paediatric Rehabilitation Service
- The Department of Paediatrics at the University of Melbourne
Our team includes around 80 paid and honorary staff, with a strong national and international research track record.
Our main research streams
Group Leaders
Team Leaders
Group Members
Our projects
Accelerated Gene Identification Program
Gene discovery program for rare genetic conditions, with a particular focus on neurogenetics and brain development.
Read more...
CP-Pathfinding: Fitness for Life
A resource designed for young adults with cerebral palsy, by young adults with cerebral palsy, their key supporters, allied health professionals, and researchers.
To better support physical activity experiences at home or in the community.
Read more...
Gene discovery in cerebral palsy study
Discovering new genes to better understand Cerebral Palsy.
Read more...
IRIS study
In the IRIS research study, we are looking to find out whether a medication in a research study might improve the social and communication challenges that autistic people might experience.
Pain education for children with cerebral palsy (CP)
We will co-create an innovative pain education intervention for children with cerebral palsy and chronic pain by partnering with people with lived experience of cerebral palsy.
This national program of research focuses on understanding the pain experience of children with cerebral palsy and developing accurate and innovative methods to identify and measure pain in this population of children. This will lead to studies of more effective pain management for children with developmental disabilities.
Read more...
SPOT-ME Study – Chronic Fatigue Syndrome Research
This study is investigating the biological and cognitive effects of chronic fatigue syndrome in adolescents.
Read more...
The COGNITION Study
We are inviting you and your child to take part in the COGNITION Study. ‘Cognition’ and ‘cognitive development’ are terms that we use to explain how someone thinks and figure things out. This can include tasks such as learning, memory and attention.
Read more...
Towards treatment of intellectual disability caused by errors in the chromatin machinery
Intellectual disability occurs in two to three per cent of newborns, for a variety of reasons, including environmental factors, chromosomal abnormalities, and variations in single genes. Recently, it has been recognised that intellectual disability resulting from inborn errors in the chromatin machinery may be treatable. Over 70 genetic syndromes have so far been identified in this category.
This project focuses on neurodevelopmental conditions caused by variations in chromatin factors, because chromatin changes are reversible, and are therefore potential therapeutic targets.
Read more...
Understanding clinical features of paediatric chronic fatigue syndrome
This study is complete. Aiming to improve the quality of life for children and adolescents with Chronic Fatigue Syndrome (CFS).
Read more...
Understanding the causes of loss of skills in autism
The Loss of Skills study will collect high-quality information about children with autism or social and communication impairments consistent with autism who have a substantial loss of skills.
Read more...
Victorian Cerebral Palsy Register (VCPR)
The Victorian Cerebral Palsy Register (VCPR) is a long-running population-based register and study of cerebral palsy in Victoria.
We collect health information on people with cerebral palsy who were born, had lived, or had received health services in Victoria from 1970 onwards.
Read more...Improving understanding of MRI patterns, structure-function relationships, and causal pathways in cerebral palsy
This program has focussed on classifying 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. This research has led to the development of a new classification of causal pathways in cerebral palsy and a body of research examining the importance of antecedent factors to each pathway.
Dyskinesia in children with cerebral palsy
This national collaborative program of research has three streams: identification and measurement of dyskinesia, interventions, and the lived experience. The program has research activities within each stream, led by a number of key clinician-researchers from around Australia.
iWHOT: Infant Wrist Hand Orthosis Trial
Children with cerebral palsy are often prescribed hand orthoses (“splints”) to maintain hand movements and help them develop skills, such as holding cutlery or toys.
However, orthoses are challenging for children to wear, time-consuming for therapists to make and for families to manage, and of uncertain benefit for the child.
Our multicentre trial aims to evaluate whether orthoses actually help children with cerebral palsy to maintain hand movements and use their hands. The trial is recruiting children aged less than three years with, or at risk of cerebral palsy.
Towards treatment of intellectual disability caused by errors in the chromatin machinery
Intellectual disability occurs in two to three per cent of newborns, for a variety of reasons, including environmental factors, chromosomal abnormalities, and mutations in single genes. Recently, it has been recognised that intellectual disability resulting from inborn errors in the chromatin machinery may be treatable.
Over 40 genetic syndromes have so far been identified in this category. This project will focus on mutations in chromatin factors and chromatin-modifying enzymes found in patients with intellectual disability because chromatin changes are reversible, and these classes of molecules are well-established as therapeutic targets in other disorders.
Moderate to severe acquired brain injury
Many children with acquired brain injury (ABI) experience long-term physical, cognitive, academic, emotional-behavioural, and occupational difficulties that require input from an interdisciplinary team.
We aim to improve evidence-informed care in paediatric acquired brain injury rehabilitation by systematically identifying evidence-practice gaps and implementing tailored interventions to address these gaps.
Areas of particular focus include family-centred care, peer support, goal setting, school reintegration, and fatigue assessment and management. We partner with family members and young people with lived experience of childhood acquired brain injury and the interdisciplinary clinical team.
Technology
Everyday technology, including smartphones, touchpads, smartwatches, and the connected home, has the potential to dramatically improve the lives of those with disability.
Our experience talking with families is that many do not use the accessibility features freely available on their devices, and many are not aware of the potential benefits of using those features.
We aim to identify what benefits are available from everyday technology, how best to configure devices, assess barriers to implementation, and develop training programs both for staff and families.
ENVISAGE: Enabling Visions And Growing Expectations
Our Australia/Canada team created and is delivering and evaluating an ‘ENVISAGE’ program for families, to empower parents of children with a neurodevelopmental condition, enhance family well-being, and mitigate psychosocial morbidities to which these families are prone.
The five week online program, co-designed with parents and carers, covers five themes:
- A holistic approach to health, based on the ICF and our ‘F-words’ adaptation (function, family, fun, friendships, fitness, future).
- Child and family development.
- Challenges and joys of parenting in childhood disability.
- Balancing caregiving with self-care.
- Skills to connect, communicate, and collaborate.
The project is currently recruiting parents/caregivers of children with a neuro-developmental disability aged under six years.
Mental health and participation in (re)habilitation for children and youth with disabilities
Mental health problems and participation restrictions are frequently reported for children with disabilities. There is little information on the long-term relationships between mental health and participation in the presence of child-onset disability, or about how mental health is affected by (re)habilitation services provided for these children and families.
This collaborative program of research will investigate relations between participation and factors affecting participation, with a focus on mental health and services provided to children with disabilities who have mental health problems.
Implementation of an evidence-based intervention (PREP) in an Australian context with youth with complex disability and evaluation of involvement of consumer research partners (CEval)
This consumer-researcher collaborative study includes two projects:
- A translational study to identify the feasibility and applicability of the Pathways and Resources for Engagement and Participation (PREP) intervention for young adults with complex disability when translated to an Australian context.
- An evaluation of the experience and impact of involving consumers as co-researchers (Consumer Evaluation (CEval) project).
PREP has demonstrated effectiveness in younger populations in Canada to improve participation in community recreation of adolescents with disability. We are working with the developer of PREP (Anaby) to customize and evaluate the feasibility and applicability of using PREP to improve participation in community activities of young adults in Melbourne.
Consumer partnership in research is best practice, and we are involving consumers as co-researchers and on the Research Advisory Partners (RAP) in the PREP project.
Funding
Thank you to our supporters.
- Bioautism
- Canadian Institutes for Health Research
- Cerebral Palsy Alliance
- DoBees and Trailblazers auxiliaries
- Endeavour Foundation
- Equity Trustees and the Percy and Ruby Haddy Foundation
- Financial Markets Foundation for Children
- Housing, Community Services and Indigenous Affairs
- Ian Potter Foundation
- Lorenzo and Pamela Galli Charitable Trust
- Marian & E.H. Flack Trust
- Mason Foundation
- Medical Research Futures Fund
- Melbourne Academic Centre for Health
- Melbourne Disability Institute
- Murdoch Children's Research Institute
- National Disability Insurance Scheme, Department of Families
- National Health and Medical Research Council
- National Institutes of Health, USA
- Perpetual Philanthropic Services
- RCH Pied Pipers
- Scobie & Claire Mackinnon Trust
- State Trustees
- Swedish Research Council
- The Royal Children’s Hospital Foundation
- The University of Melbourne
- Victorian Department of Health
- Victorian Medical Insurance Agency
- Victorian Stroke Clinical Network
- William Collie Bequest
Collaborations
We collaborate with leading institutions worldwide, including:
- Australian Catholic University
- Australian Cerebral Palsy Register group
- Bloorview Research Institute
- CanChild Centre for Childhood Disability Research
- Cerebral Palsy Alliance
- Children's Hospital at Westmead
- CHILD Research Group, Jonkoping University
- CPL – Choice Passion Life, QLD
- Deakin University
- Djerriwarrh Health Services
- Griffith University
- LaTrobe University
- Menzies Health Institute
- Menzies School of Health Research
- Monash Children’s Hospital
- Monash Health
- Novita, South Australia
- Perth Children’s Hospital
- Queensland Children’s Hospital
- Queensland Health
- St Vincent’s Hospital, Melbourne
- Surveillance of Cerebral Palsy in Europe network
- The Sydney Children’s Hospital Network
- UMC Utrecht
- University of Alberta
- University of Chicago
- University of Liverpool
- University of Notre-Dame
- University of NSW
- University of Sydney
- University of Western Australia
- Yooralla
Featured publications
Shepherd DA, Amor DJ, Moreno-Betancur M. Statistical analysis of observational studies in disability research. Dev Med Child Neurol. 2024 Nov;66(11):1408-1418. doi: 10.1111/dmcn.15948. Epub 2024 May 9. PMID: 38721699.
Donoghue S, Wright J, Voss AK, Lockhart PJ, Amor DJ. The Mendelian disorders of chromatin machinery: Harnessing metabolic pathways and therapies for treatment. Mol Genet Metab. 2024 May;142(1):108360. doi: 10.1016/j.ymgme.2024.108360. Epub 2024 Feb 27. PMID: 38428378.
Harvey AR, Meehan E, Merrick N, D'Aprano AL, Cox GR, Williams K, Gibb SM, Mountford NJ, Connell TG, Cohen E. Comprehensive care programmes for children with medical complexity. Cochrane Database Syst Rev. 2024 May 30;5(5):CD013329. doi: 10.1002/14651858.CD013329.pub2. PMID: 38813833; PMCID: PMC11137836.
Harvey A, Shepherd D, Gibb S, Baikie G, D'Aprano A, Reddihough D, Babic R, Hunter F, Jealous G, Imms C. Impact of care coordination on service utilisation for children with medically complex cerebral palsy. J Paediatr Child Health. 2024 Dec;60(12):815-824. doi: 10.1111/jpc.16690. Epub 2024 Oct 9. PMID: 39385404; PMCID: PMC11616251.
Crompton K, Godler DE, Ling L, Elwood N, Mechinaud-Heloury F, Soosay Raj T, Hsiao KC, Fleming J, Tiedemann K, Novak I, Fahey M, Wang X, Lee KJ, Colditz PB, Edwards P, Reddihough D. Umbilical Cord Blood Cell Clearance Post-Infusion in Immune-Competent Children with Cerebral Palsy. Cells Tissues Organs. 2023;212(6):546-553. doi: 10.1159/000527612. Epub 2022 Oct 19. PMID: 36261026.
Hinwood GL, Loftus H, Shepherd DA, Guzys A, Reddihough DS, Reid SM. Survival of individuals with cerebral palsy in Victoria, Australia: A longitudinal cohort study spanning four decades. Dev Med Child Neurol. 2023 Apr;65(4):580-587. doi: 10.1111/dmcn.15420. Epub 2022 Sep 26. PMID: 36161450.
Knight S, Rodda J, Tavender E, Anderson V, Lannin NA, Scheinberg A. Understanding factors that influence goal setting in rehabilitation for paediatric acquired brain injury: a qualitative study using the Theoretical Domains Framework. Brain Impair. 2024 Apr;25:IB23103. doi: 10.1071/IB23103. PMID: 38593747.
Josev EK, Chen J, Seal M, Scheinberg A, Cole RC, Rowe K, Lubitz L, Knight SJ. What lies beneath: White matter microstructure in pediatric myalgic encephalomyelitis/chronic fatigue syndrome using diffusion MRI. J Neurosci Res. 2023 Oct;101(10):1572-1585. doi: 10.1002/jnr.25223. Epub 2023 Jun 18. PMID: 37331007.