current projects


The CP Institute is currently involved in the following research projects.

Accelerating our understanding of the causal pathways to cerebral palsy with a computer supported discovery system

Primary investigator: Enrico Coiera (University of New South Wales)
Co-investigators: Sarah McIntyre (CP Institute), Iona Novak (CP Institute), Katherine Swinburn (CP Institute), Monique Hines (CP Institute)

Research and knowledge is expanding rapidly regarding cerebral palsy and it is thought that a computer supported discovery environment may be able to accelerate the way in which we understand causal pathways to cerebral palsy. This project aims to develop software tools that search the published scientific literature and assist in exploring and partially answering aetiology questions posed by cerebral palsy researchers.

Antenatal Magnesium Sulphate Guidelines

The Antenatal Magnesium Sulphate for Neuroprotection Guideline Development Panel
Executive members: Caroline Crowther (The University of Adelaide), Philippa Middleton (The University of Adelaide), Tanya Bubner (The University of Adelaide), Helen Oakey (The University of Adelaide), Lisa Askie (University of Sydney), Jonathan Morris (University of Sydney), Lex Doyle (University of Melbourne), Vicki Flenady (Mater Health Services, University of Queensland), Peter Davis (Royal Women’s Hospital, University of Melbourne)

These clinical guidelines has been developed by an Australasian panel, including Sarah McIntyre, Cerebral Palsy Representative (CP Institute). The purpose of the guidelines is to implement the use of magnesium sulphate in women at risk of early preterm imminent birth for the neuroprotection of the fetus, infant and child. A national audit is being developed to monitor the uptake of these guidelines.

Australian cerebral palsy register

Primary investigator:Iona Novak (CP Institute), Sarah McIntyre (CP Institute)
Co-investigators: The Australian Cerebral Palsy Register group

The purpose of this project is to build and maintain an Australian-wide cerebral palsy population register to be known as the Australian Cerebral Palsy Register (ACPR). This register collects data from each of the state and territory registers about the incidence and prevalence of cerebral palsy (CP). The Australian-wide register will supply data to researchers to investigate the cause and prevention of cerebral palsy; and enable service providers to plan for the present and future service provision needs of people with cerebral palsy.

Australian cerebral palsy register phase II / CPUP

Children with cerebral palsy are at risk of hip displacement and dislocation; hip dislocation amongst the entire CP population is estimated at 15-20%, however is much higher in more severely affected children. In 1994 southern Sweden instituted a health care program “CPUP”, planning is now underway to replicate this program in NSW. Each child is followed up by with a standardized, internet-based recording form, results are synthesised and a report is provided to their local therapists, giving a detailed picture of the child’s development over time. With this information, early detection of deterioration is possible, facilitating early intervention to help prevent the development of hip dislocation, severe contracture, and scoliosis.

A genomic basis for cerebral palsy – studies on a large Australian cohort

Primary investigators: Alastair MacLennan (University of Adelaide), Catherine Gibson (University of Adelaide), Paul Goldwater (Children’s, Youth and Women’s Health Service, Adelaide)
Associate investigators: Gustaaf Dekker (University of Adelaide), Eric Haan (Children’s, Youth and Women’s Health Service, Adelaide), Annabelle Chan (Department of Health, SA), Michael deLacy (Cerebral Palsy League of Queensland), Sarah McIntyre (CP Institute), Peter Flett (Calvary Rehabilitation Services).

The main aim of this national case-control study is to investigate the role of gene mutations altering the fetal inflammatory response and the risk of abnormal clotting in the causation of CP. This will be the largest study of its kind in the world.

Cerebral palsy in children born at term: analysis of the WA case-control study

Primary investigator: Sarah McIntyre, CP Institute
Co-investigators: Nadia Badawi (University of Sydney) and Eve Blair (University of Western Australia)

This study seeks to understand more about causal pathways to cerebral palsy, in particular for infants born at term (37+ weeks gestation). Relative risk is much greater for those born early and as a result an emphasis has been placed on researching this group. However infants who are born at term account for 60-65% (Watson, 2006; Reid et al., 2005). This means there are approximately 400 children in Australia each year who are born at term who are later described as having CP. This research seeks to focus on this under-researched group.

Children with disabilities and their ability to cope: Frequency and severity of negative social events as a predictor of resilience: an online approach – pilot study (phase 1)

Primary investigator: Louisa Salmon (Southern Cross University)
Supervisors: Gail Moloney (Southern Cross University), Iona Novak (CP Institute), Lewis Bizo (University of Waikato), Iain Graham (Southern Cross University)

The Australian government believes that all children have the right to learn in a safe and supportive school environment that values diversity, however it is not known if children with physical disabilities truly experience an environment free from bullying, harassment, discrimination and violence. This study aims to ascertain the extent to which children with physical disabilities experience bullyingat school, whether children with more severe physical disabilities are less able to cope psychologically, if children with physical disabilities have different thresholds for bullying to their peers, and whether exposure to bullying is related to resilience to bullying.

CP Register

The CP Register is a web-based database of information about people with cerebral palsy. It’s main aims are to identify the causes of CP, find ways to prevent and manage CP and help to plan services for children and adults with CP.

Find out more about the CP Register

Register now!

Development of an evidence-based casting protocol for children with cerebral palsy: a multicentre randomised controlled trial

Primary investigators: Natasha Lannin (University of Sydney), Anne Cusick (University of Western Sydney), Iona Novak (CP Institute), Megan Thorley (Queensland Cerebral Palsy Health Service)

Therapists routinely use plaster casts on upper limbs of children with cerebral palsy to lengthen tight muscles with a view to reducing contracture. A series of casts are applied to increase range of movement. This practice has little research evidence to support it. This multi-centre randomised controlled trial aims to determine the impact of serial casting the elbow of children with cerebral palsy who have existing contractures at that joint. The study will provide evidence regarding casting effectiveness and will inform guidelines for clinical application.

Effectiveness of providing communication skills training and evidence based practice (EBP) training for challenging health professionals’ clinical decision making and outcomes of care

Primary investigators: Lanie Campbell (University of Notre Dame Australia), Iona Novak (CP Institute), Sarah McIntyre (CP Institute)
Associate investigators: Shona Goldsmith (CP Institute), Elise Stumbles (The Spastic Centre)

Despite EBP being widely endorsed and embraced by allied health professionals, uptake of the approach has been slow and inconsistent. Good communication skills between health professionals and clients/patients is essential for the delivery of high quality care. This single blinded cross-over randomised controlled trial aims to a) measure the impact of EBP decision-making training (2-days) and provision of an EBP library, and (b) measure the impact of communication skills workshop (2-days) on practitioner-client interactions.

Effectiveness of occupational therapy home program intervention for children with cerebral palsy: a double blinded randomised controlled trial

Primary investigator: Iona Novak (CP Institute)
Co-investigators: Anne Cusick (University of Western Sydney) and Natasha Lannin (University of Sydney)

For children with cerebral palsy, regular involvement in a home program is thought to lead to better achievement of goals, abilities and movement skills. This project aims to work out how much of a difference it makes by parents being involved in therapy through a home program and to understand the experience of participating in a home program from a parents perspective.

Emerging adults with cerebral palsy: the transition from adolescence to young adulthood

Primary investigator: Nicole Ison (University of Western Sydney)
Co-investigators: Anne Cusick (University of Western Sydney), Iona Novak (CP Institute) and Rosalind Bye (University of Western Sydney)

This research project investigates the experiences and goals of people with cerebral palsy aged 18-25 years as they experience the transition to adulthood. It aims to enable young people with all types and levels of severity of cerebral palsy to tell their stories about what life is like and what is important to them. Unstructured interviews are being used to elicit narratives in a multitude of areas, for example friendships, relationships, work, education, community access, participation, and the meaning of adulthood. Results will offer service providers a greater understanding of the experiences of emerging adults with cerebral palsy and a basis from which to develop and implement services and supports that may be useful in assisting young people to meet their goals.

Evaluation of the CAL (Competency, Assessment and Local Solutions) program, Fiji

Primary investigator: Julia Salmon (The Spastic Centre)
Co-investigators: Sarah McIntyre (CP Institute)

The CAL program provides a combination of clinical support (C), assessment and consultancy (A) and local/community participation (L) activities to address needs of children with disabilities in Fiji. The evaluation will:

Evaluation of a year five Disability Awareness Package – Just like you!

Primary investigator: Liz Foy (The Spastic Centre)
Co-investigators: Sophie Rothery (The Spastic Centre - Volunteer), Samantha Parsonage (The Spastic Centre), Hayley Smithers-Sheedy (The Spastic Centre) and Nicole Ison (CP Institute)

This project aims to determine the effectiveness of a short disability awareness program in developing primary school students’ knowledge about, and attitude towards, people with disabilities in three pilot primary schools.

International consensus statements for botulinum toxin

Primary investigator: Kerr Graham (RCH, Melbourne), Victor Fung (Westmead Hospital), John Olver (Epworth Rehabilitation), Barry Rawicki (Monash Medical Centre), Barby Singer (University of Western Australia), Iona Novak (CP Institute)

There is a need to develop an International Consensus Statement, for the use of BoNT-A with neurological condition such as hypertonicity of the upper and lower limbs, Spastic dystonia and sialorrhea, as the systematic reviews have been inconclusive, there is widespread product use, in some cases standard practice, there is an expanding base of evidence regarding BoNT-A use, and an increase in consumer demand.

An International Consensus Statement will be developed which outlines:

Intersect: World Cerebral Palsy Register and Surveillance Collaboration

This online forum has been developed in response to recommendations made at the completion of the World CP Register Congress during the International Cerebral Palsy Conference, 2009. It is hoped, Intersect will provide a place for individuals in this field to: explore specific issues relating to CP Registers and surveillance, share expertise and generate future collaborations.

Is there a causal relationship between commonly used severity classifications and the assistive equipment needs of children with cerebral palsy?

Primary investigator: Iona Novak (CP Institute)
Co-investigators: Cathy Morgan (The Spastic Centre), Hayley Smithers-Sheedy (CP Institute)

Many children who have cerebral palsy will require the use of costly assistive technology, mobility aids or communication systems during the course of their lifetime. This project is conducting a retrospective review of 300 case notes / reports to collect information as to the severity classifications in the domains of gross motor function, functional communication abilities, intellectual functioning and fine motor function and to additionally collect information about the equipment prescribed / in use. This data will be analysed to consider whether there is any association between severity classifications in these domains and the types of equipment prescribed.

Mixed methods: Collaborative practices, children with cerebral palsy and assistive technology in the classroom

Primary investigator: Petra Karlsson (University of Western Sydney, CP Institute)
Principal Supervisor: Christine Johnson (University of Western Sydney)

Little has been documented regarding collaborative services and experiences of children with CP, their parents, teachers and therapists. This study aims to: (1)Further clarify the nature of the relationships between children with CP, parents and professionals; (2) Offer guidance to professionals and pre-service preparation programs, who seek to use child-parent-professional partnerships to accomplish desired academic, social, communication and independence outcomes in the classroom for children with CP.

Modified constraint-induced therapy for children with cerebral palsy: a randomised trial

Primary investigator: Margaret Wallen (The Children’s Hospital at Westmead)
Co-investigators: Iona Novak (CP Institute), Ruth Evans (The Children’s Hospital at Westmead)

The aim of this study is to conduct a randomised trial (RCT) comparing the effects of modified constraint-induced therapy with standard occupational therapy on upper limb function and the ability to complete important daily activities of children with hemiplegic cerebral palsy. The impact of modified constraint-induced therapy on children’s performance on important everyday tasks, not just on measures of impairment, is addressed in this trial. Further we seek feedback from families about their perception of implementing modified constraint-induced therapy. We aim to provide the highest level of evidence to inform clinical practice.

Prioritisation of cerebral palsy research: a Delphi study

Primary investigator: Sarah McIntyre (CP Institute)
Co-investigators: Iona Novak (CP Institute), Anne Cusick (University of Western Sydney), Nadia Williams (University of Western Sydney)

Cerebral palsy is the most common childhood disability, people with cerebral palsy and the community are in need of research to provide answers both about effective intervention and prevention strategies for cerebral palsy. There is little indication of explicit prioritisation of cerebral palsy research in either Australia or internationally. This study will address this gap using a research method called “Delphi technique”. Representative consumers and researchers will be surveyed to identify and grade the importance of research topics until consensus is reached. The findings of this study will provide new insights to inform the research priorities of The Spastic Centre’s CP Foundation.

Psychometric properties of the Quality of Upper Extremity Skills Test (QUEST) for children with cerebral palsy

Primary investigator: Megan Thorley (Queensland Cerebral Palsy Health Service, University of Sydney)
Co-investigators: Natasha Lannin (University of Sydney), Anne Cusick (University of Western Sydney), Iona Novak (CP Institute), Roslyn Boyd (Queensland Cerebral Palsy and Rehabilitation Research Centre, University of Queensland)

The QUEST is a criterion referenced assessment, used to test the quality of upper limb movement in children with CP who have spasticity. While it has been used widely in efficacy studies for interventions of upper limb dysfunction, limited information about the psychometric properties of the QUEST are available. The aim of this study is the examine the internal consistency, inter-rater and intra-rater reliability of the QUEST item, domain and total scores.

What does our future hold?: Prognosis of cerebral palsy systematic literature review

Primary investigator: Iona Novak (CP Institute)
Co-investigators: Shona Goldsmith (CP Institute), Monique Hines (CP Institute)

Families of children with CP want to know about prognosis, to help them with planning family-centred services. This project aims to systematically review the published evidence regarding the rates of associated impairments in CP, the likelihood of future unwanted events occurring, and the associations between risk factors and outcomes.