Research Projects and Priorities

Our Research Priorities

Our research priorities are informed by our clients and their families. These are defined by the Delphi survey conducted by our research team in 2007. The study involved interviewing clinicians, families and researchers to identify a range of questions about cerebral palsy to help shape the direction of future cerebral palsy research.

Moreover, in 2018, members of CP QUEST produced an updated list of research priorities available here.

As evidence is established, we anticipate that priority research topics will change.

Our Research Projects

Currently Recruiting Studies

The project aims to investigate the relationship between emotion regulation and cerebral palsy in adults. Surveys will be sent to participants (or their parents/carers) via email or mail, using a survey created in The University of Sydney’s REDCap database. Participants must be 18 years or older, have cerebral palsy, and no known moderate to severe intellectual impairment. The study is expected to inform our understanding of emotion regulation in adults with cerebral palsy which has not been studied to date. This will inform service needs of adults with cerebral palsy.

Research Area/s: Treatment, Policy/Advocacy

Chief Investigators:

  • Dr Hayley Smithers-Sheedy – Cerebral Palsy Alliance Research Institute
  • Dr Ingrid Honan – Cerebral Palsy Alliance Research Institute
  • Fiona Given
  • Emma Waight – Cerebral Palsy Alliance Research Institute
  • Joan Bratel – Cerebral Palsy Alliance
  • Katarina Ostojic – Cerebral Palsy Alliance Research Institute

Associate Investigators: Dr David Rowell, Assistant Professor Keiko Shikako-Thomas, Dr Sarah Reedman, Prof Robert Ware, Ms Lynda McNamara

Funding information: NHMRC (1144566), 2019-2021

Find out more about this study

If you would like to find out more about this study please contact: Dr Hayley Smithers-Sheedy

Email: hsmitherssheedy@cerebralpalsy.org.au

Phone: (02) 9975 8000

Optimising Participation in Physical Activity Leisure for Children with Cerebral Palsy: A Randomised Controlled Trial (ParticiPAte CP)

The intervention aims to get kids with Cerebral Palsy to participate in sports and physical activities that are meaningful to them. It is delivered by a physiotherapist, occupational therapist or exercise physiologist.

Research Area/s: Treatment

Chief Investigators:

  • Dr Leanne Sakzewski – Queensland Cerebral Palsy and Rehabilitation Research Centre
  • Prof Catherine Elliot – Curtin University
  • Prof Roslyn Boyd – Queensland Cerebral Palsy and Rehabilitation Research Centre
  • Prof Jenny Ziviani – Queensland University of Technology Australia
  • Prof Iona Novak – Cerebral Palsy Alliance Research Institute
  • Prof Stewart Trost – Queensland University of Technology Australia
  • Prof Annette Majnemer – McGill Centre for Medical Education

Associate Investigators: Dr David Rowell, Assistant Professor Keiko Shikako-Thomas, Dr Sarah Reedman, Prof Robert Ware, Ms Lynda McNamara

Funding information: NHMRC, APP1140756, $1,014.870.60, 2018-2021

More information about the research:

Find out more about this study

If you would like to find out more about this study please contact: Emma Stanton

Email: estanton@cerebralpalsy.org.au

Phone: (02) 47368722

A randomised trial of Hand Arm Bimanual Intensive Training including Lower Extremity training (HABIT-ILE) for children with bilateral cerebral palsy

Children with cerebral palsy can find it difficult to use their two hands together to do everyday activities. They can also have trouble with their gross motor skills and how they move around. We are testing an intensive type of therapy called Hand Arm Bimanual Intensive Training Including Lower Extremity Training (HABIT-ILE) delivered by physiotherapists, occupational therapists and therapy students that helps children to improve their motor skills and independence in daily life activities.

Research Area/s: Treatment

Chief Investigators:

  • Dr Leanne Sakzewski – Queensland Cerebral Palsy and Rehabilitation Research Centre
  • Prof Roslyn Boyd – Queensland Cerebral Palsy and Rehabilitation Research Centre
  • Prof Iona Novak – Cerebral Palsy Alliance Research Institute
  • Prof Catherine Elliot – Curtin University
  • Dr Cathy Morgan – Cerebral Palsy Alliance Research Institute
  • Dr Kerstin Pannek – Queensland Cerebral Palsy and Rehabilitation Research Centre
  • Dr Yannick Bleyenheuft – Université catholique de Louvain, Belgium

Funding information: NHMRC, APP1144846, 2018-2022

More information about the research:

Find out more about this study

If you would like to find out more about this study please contact: Dr Ashleigh Hines

Email: ahines@cerebralpalsy.org.au

Phone: (02) 8777 1777

Early diagnosis and early intervention for infants with cerebral palsy: implementation of international evidence-based guidelines into practice.

This project includes partners from hospitals and community organisations across NSW, VIC and QLD, to help translate breakthrough research in diagnosing cerebral palsy earlier into practice.

There are 4 phases:

  1. Screening 1000 babies at-risk of CP, to embed early detection processes into health services
  2. Comprehensive assessment of 300 babies at very high risk of CP between 3 and 24 months to answer key questions parents have about the development patterns and trajectory for their children
  3. Comparing the cost of early intervention vs. current practices
  4. Measuring how successful early intervention guideline implementation has been across these services.

Research Area/s: Treatment, Policy/Advocacy

Chief Investigators:

  • A/Prof Alicia Spittle – University of Melbourne
  • Prof Iona Novak – Cerebral Palsy Alliance, University of Sydney
  • Prof Roslyn Boyd – University of Queensland
  • Dr Catherine Morgan – Cerebral Palsy Alliance, University of Sydney
  • Prof Lex Doyle – University of Melbourne
  • Prof Russell Dale – University of Sydney
  • Prof Paul Scuffham – Griffith University
  • Dr Koa Whittingham – University of Queensland
  • Prof Paul Colditz – University of Queensland
  • Dr Kerstin Pannek – CSIRO Health and Biosecurity

Associate Investigators: Prof Peter Anderson, Claire Galea, Dr Joanne George, A/Prof Katherine Lee, Lynda McNamara, Hiam Sakakini, Meredith Wynter, A/Prof Michael Fahey, Joy Olsen, Anna te Velde

Funding information: NHMRC, The Cerebral Palsy Alliance Research Foundation (Phase 2), Partner organisations contribute support (cash and in-kind) for this research project as part of the Partnership Grant scheme: The Royal Women’s Hospital, The Cerebral Palsy Alliance, The Royal Children’s Hospital, Children’s Health Queensland, The Children’s Hospital at Westmead, Royal Brisbane and Women’s Hospital, Monash Health, 2018-2022.

Find out more about this study

If you would like to find out more about this study please contact: Cathy Morgan or Anna te Velde

Email: cmorgan@cerebralpalsy.org.au or atevelde@cerebralpalsy.org.au

Phone: 0408 205 542

Understanding the Early Natural History of Cerebral Palsy – A Prospective Cohort Study (Phase 2 of Partnerships project)

This study will describe the early natural history of cerebral palsy (CP) by mapping the development of infants with or at high risk of CP. Infants will be assessed at regularly from birth to two years across a variety of areas, including motor, neurological and cognitive development, to provide the first comprehensive developmental trajectories of this group. We will build on existing knowledge of how infants with CP develop which will assist with building accurate prognostic information to direct parents towards early targeted interventions. This study is a part of a larger multi-site study being conducted across Australia and overseas.

Research Area/s: Treatment

Chief Investigators:

  • Dr Cathy Morgan – Cerebral Palsy Alliance Research Institute
  • A/Prof Alicia Spittle – University of Melbourne
  • Prof Iona Novak – Cerebral Palsy Alliance Research Institute
  • Prof Roslyn Boyd – University of Queensland
  • Prof Russell Dale – Children’s Hospital at Westmead
  • Prof Paul Schuffham – Griffith University
  • Dr Koa Whittingham – University of Queensland
  • A/Prof Michael Fahey – Monash University
  • Dr Kerstin Pannek – CSIRO
  • Ms Anna te Velde – Cerebral Palsy Alliance Research Institute

Funding information:NHMRC Partnership Projects Phase I (APP1152800), Cerebral Palsy Alliance Research Foundation, 2018-2022

Find out more about this study

If you would like to find out more about this study please contact: Anna te Velde

Email: atevelde@cerebralpalsy.org.au

Phone: (02) 8777 1749

Harnessing neuroplasticity to improve motor performance in infants with cerebral palsy: A pragmatic randomized controlled trial.

Every 15 hours an Australian baby is born with cerebral palsy. Despite confidence in early intervention, 50% don’t receive intervention before their first birthday while awaiting diagnosis. We have promising data about a new brain training intervention (GAME) that harnesses neuroplasticity and improves movement. 300 infants receive either early brain training, or Standard Care alone. We are comparing whether or not the early brain training delivers any benefits over and above Standard Care. Babies with, or at high-risk of, cerebral palsy, will participate from 3-24 months of age. This study involves sites from NSW, VIC, WA and QLD.

Research Area/s: Treatment

Chief Investigators:

  • Prof Iona Novak – Cerebral Palsy Alliance Research Institute
  • Dr Cathy Morgan – Cerebral Palsy Alliance Research Institute
  • Prof Nadia Badawi – Children’s Hospital Westmead
  • Prof Roslyn Boyd – University of Queensland
  • A/Prof Alicia Spittle – Royal Children’s Hospital
  • Prof Russell Dale – Children’s Hospital Westmead
  • Ms Adrienne Kirby – University of Sydney
  • A/Prof Rodney Hunt – Royal Children’s Hospital
  • Dr Koa Whittingham – University of Queensland
  • Dr Kerstin Pannek – CSIRO
  • A/Prof Michael Fahey – Monash Health

Associate Investigators:A/Prof Karen Walker, Dr Andrea Guzzetta, Dr Kristina Prelog, Prof William Tarnow Mordi, Prof Stephen Rose, Mrs Claire Galea, Ms Shannon Clough, A/Prof Rachel Morton, Dr Anh Tran, Prof Catherine Elliott, A/Prof Jane Valentine

Funding information:NHMRC, 2017-2021

Find out more about this study

If you would like to find out more about this study please contact: Cathy Morgan

Email: cmorgan@cerebralpalsy.org.au

Phone: 0408 205 542

Preventing adverse outcomes of neonatal encephalopathy with Erythropoietin – the PAEAN study

A lack of oxygen before or during birth can destroy brain cells and cause permanent injury. Erythropoietin (Epo) makes more red blood cells and naturally appears in the brain during injury to initiate repair. We wanted to know if adding a higher dose of synthetic Epo might produce full brain repair. This study determines whether Epo plus conventional care for newborn babies (born ≥35 weeks), who have suffered from a lack of oxygen to the brain at birth, reduces death and disability in survivors at two years of age.

Research Area/s: Prevention, Cure

Chief Investigators:

  • Prof Helen Liley – Mater Hospital
  • Prof Nadia Badawi – Cerebral Palsy Alliance
  • A/Prof Susan Jacobs – University of Melbourne
  • Ms Rachel O’Connell – University of Sydney
  • Dr Malcolm Battin – Auckland City Hospital
  • Prof Rod Hunt – Murdoch Children’s Research Institute
  • Prof Iona Novak – Cerebral Palsy Alliance
  • Prof Lisa Askie – University of Sydney

Associate Investigators: Dr Sarah McIntyre

Funding information: NHMRC (Project Grant 1064294), Cerebral Palsy Alliance, 2016-2020

More information about the research:

Find out more about this study

If you would like to find out more about this study please contact: PAEAN Coordinator

Email: paean@ctc.usyd.edu.au

Phone: (02) 9562 5000

Innovative Assessment of Receptive Language in People with Cerebral Palsy who are nonverbal: A Comparison of Eye-Gaze Interface and Brain-Computer Interface Test Administration Method

Accurate cognitive assessment of people with cerebral palsy (CP) is necessary to target interventions for communication, social participation, and education. Current assessments require speech or motor ability, so are unsuitable for people with significant physical disability. Some assessments can be adapted for Eye-Gaze Interface (EGI) (requiring only eye movements) and Brain-Computer Interfaces (BCI) (requiring no movement). These interfaces are promising options for cognitive assessment. This study compares EGI with BCI in administering a vocabulary test to determine which more effectively accommodates people with multiple impairments. Children and adults with CP in the United States and Australia will compare the interfaces.

Research Area/s: Technology

Chief Investigators:

  • Dr Jane Huggins – University of Michigan

Associate Investigators: Prof Seth Warschausky, Dr Petra Karlsson

Funding information: Cerebral Palsy Alliance Research Foundation, 2016

Find out more about this study

If you would like to find out more about this study please contact: Petra Karlsson

Email: pkarlsson@cerebralpalsy.org.au

Phone: 0447 508 661

Some infants with, or at high risk of cerebral palsy have one side of their body more impacted than the other (hemiplegia). This study is comparing two therapies used for babies (between 3 and 15 months old) with a hemiplegia. 75 babies will be allocated to modified constraint induced movement therapy (mCIMT), where the unimpaired hand is covered to allow training of the impaired hand. 75 babies to bimanual occupational therapy, which encourages play that uses both hands. This project is taking place across NSW, VIC and QLD.

Research Area/s: Treatment

Chief Investigators:

  • Prof Roslyn Boyd – University of Queensland
  • Prof Jenny Ziviani – University of Queensland
  • Dr Leanne Sakzewski – University of Queensland
  • Prof Iona Novak – Cerebral Palsy Alliance Research Institute
  • Prof Nadia Badawi – Children’s Hospital Westmead
  • Dr Kerstin Pannek – CSIRO
  • Prof Catherine Elliott – Princess Margaret Hospital
  • Dr Sue Greaves – Royal Children’s Hospital
  • Dr Andrea Guzzetta – IRCCS Stella Maris
  • Dr Koa Whittingham – University of Queensland

Associate Investigators: A/Prof Jane Valentine, Prof Paul Colditz, Dr Robert Ware, Dr Cathy Morgan, Dr Margaret Wallen, A/Prof Karen Walker, Prof Russell Dale, A/Prof Stephen Rose, Dr Roslyn Ward, Dr Mary Sharp, Dr Noel French, Ms Lisa Findlay, Dr Priya Edwards, Prof Rodney Hunt, Dr Mark Mackay, Megan Thorley, Rebecca Caesar, Dr Lizelle Weber, A/Prof Michael Fahey, Prof Paul Scuffham, Dr Josh Byrnes, Dr Adriana dos Santos

Funding information: NHMRC, 2015-2019

More information about the research:

Find out more about this study

If you would like to find out more about this study please contact: Cathy Morgan

Email: cmorgan@cerebralpalsy.org.au

Phone: 0408 205 542

The purpose of this project is to host and maintain an Australian-wide cerebral palsy population register known as the Australian Cerebral Palsy Register (ACPR). This register collects data from each of the state and territory registers on the incidence and prevalence of cerebral palsy. 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. https://www.cpregister.com/.

Research Area/s: Causation, Prevention, Policy/Advocacy, Registers, Big Data

Chief Investigators:

  • Dr Sarah McIntyre – New South Wales CP Register, Cerebral Palsy Alliance Research Institute
  • Dr Hayley Smithers-Sheedy – Australian CP Register, Cerebral Palsy Alliance Research Institute
  • Shona Goldsmith – Australian Capital Territory CP Register, Cerebral Palsy Alliance Research Institute
  • Linda Watson – Western Australian Register of Developmental Anomalies – Cerebral Palsy, Department of Health WA
  • Dr Sue Reid – Victorian CP Register, Murdoch Children’s Research Institute at Royal Children’s Hospital, Melbourne
  • Dr Catherine Gibson – South Australian CP Register, Women’s and Children’s Health Network
  • Kirsty Bartlett-Clark – Tasmanian CP Register, St Giles
  • Michael Delacy – Queensland CP Register, CPL- Choice, Passion, Life and Queensland Health
  • Meredith Neilson – Northern Territory CP Register, Department of Health, Northern Territory Government

Associate Investigators: Nadia Badawi, Iona Novak, Isabelle Balde, Katarina Ostojic, Eve Blair, Noula Gibson, Dylan Gration, Sarah Love, Christalla Louca, Dinah Reddihough, Angela Guzys, Gina O’Grady, Heather Scott, Robyn Sheppard, Eliza Maloney, Leanne Diviney

Funding information: Cerebral Palsy Alliance Research Foundation, Australasian Cerebral Palsy Clinical Trials Network, NHMRC (1144566, 1113806, 1111270), 2008 onwards

More information about the research:

Find out more about this study

If you would like to find out more about this study please contact: Dr Hayley Smithers-Sheedy (Senior Research Fellow, ACPR) or Dr Sarah McIntyre (Policy Group Chairperson)

Email: cpregister@cerebralpalsy.org.au

Phone: (02) 9975 8000

The CP Register is a confidential research database of information about people with cerebral palsy in NSW and the ACT. The main aims of the CP Register are to monitor incidence and prevalence of cerebral palsy, gain further understanding about the causes of cerebral palsy, evaluate preventive strategies, and assist in planning services for children and adults who have cerebral palsy. The register also acts as a source of recruitment to studies about CP https://www.cpregister.com/.

Research Area/s: Causation, Prevention, Policy/Advocacy, Registers, Big Data

Chief Investigators:

  • Dr Sarah McIntyre – Cerebral Palsy Alliance Research Institute
  • Dr Hayley Smithers-Sheedy – Cerebral Palsy Alliance Research Institute
  • Shona Goldsmith – Cerebral Palsy Alliance Research Institute
  • Isabelle Balde – Cerebral Palsy Alliance Research Institute
  • Katarina Ostojic – Cerebral Palsy Alliance Research Institute
  • Emma Waight – Cerebral Palsy Alliance Research Institute
  • Dr Petra Karlsson – Cerebral Palsy Alliance Research Institute
  • Prof Iona Novak – Cerebral Palsy Alliance Research Institute
  • Prof Nadia Badawi – Cerebral Palsy Alliance Research Institute

Associate Investigators: Dr Simon Paget, Dr Kirsty Stewart, Karen Bau, Dr Maria Kyriagis, Kerry Hanns, Dr Heather Burnett, Nicole Gerrand, Nadia Badawi, Leanne Diviney, Natasha Garrity, Kerry Hanns, Petra Karlsson, Sophie Marmont, Tan Martin, Sarah McIntyre, Natasha Nassar, Simon Paget, Michael Peek, Ingrid Rieger, Hayley Smithers-Sheedy, Anna te Velde, Sue Woolfenden

Funding information: Cerebral Palsy Alliance Research Foundation, 2005 onwards

More information about the research:

Find out more about this study

If you would like to find out more about this study please contact: Dr Sarah McIntyre (NSW) or Shona Goldsmith (ACT)

Email: cpregister@cerebralpalsy.org.au

Phone: (02) 9975 8000

Ongoing Projects

In this study we aim to investigate the sociodemographic and clinical profiles of Aboriginal and/or Torres Strait Islander children with CP from all states and territories of Australia specifically in relation to the impact of both risk and protective factors. This includes an examination over urban, regional and remote areas; all Australian states and territories; by neighbourhood SES, and maternal age. This has immediate policy relevance for the federal government Close the Gap initiative to bring Aboriginal child health outcomes in line with non Aboriginal children.

Research Area/s: Causation, Prevention, Registers, Big Data

Chief Investigators:

  • Tan Martin – The University of Sydney
  • Dr Sue Woolfenden – The University of NSW
  • Prof Nadia Badawi – Cerebral Palsy Alliance Research Institute
  • Prof Eve Blair – Telethon Kids Institute, Perth
  • Dr Michael Adams – Kurongkurl Katitjin, Edith Cowan University
  • Prof Dinah Reddihough – Murdoch Children’s Research Institute at Royal Children’s Hospital, Melbourne
  • Dr Sarah McIntyre – New South Wales CP Register, Cerebral Palsy Alliance Research Institute
  • Dr Hayley Smithers-Sheedy – Australian CP Register, Cerebral Palsy Alliance Research Institute
  • Shona Goldsmith – Australian Capital Territory CP Register, Cerebral Palsy Alliance Research Institute
  • Linda Watson – Western Australian Register of Developmental Anomalies – Cerebral Palsy, Department of Health WA
  • Dr Sue Reid – Victorian CP Register, Murdoch Children’s Research Institute at Royal Children’s Hospital, Melbourne
  • Dr Catherine Gibson – South Australian CP Register, Women’s and Children’s Health Network
  • Kirsty Bartlett-Clark – Tasmanian CP Register, St Giles
  • Michael Delacy – Queensland CP Register, CPL- Choice, Passion, Life and Queensland Health
  • Natasha Murray – Department of Health, Northern Territory Government
  • Emma Waight – Cerebral Palsy Alliance Research Institute
  • ACPR Community Aboriginal Reference Group
  • ACPR Group

Funding information: NHMRC (1144566, 1113806, 1111270), Cerebral Palsy Alliance Research Foundation (CDG04318), Australasian Cerebral Palsy Clinical Trials Network, 2019-2021

To identify the prevalence, risk factors and causes of post-neonatally acquired cerebral palsy in Australia birth years 1995 – 2012. The design of the study will be an observational cohort study. The data from this study will be extracted from the Australian Cerebral Palsy Register to obtain a national dataset (birth years 1993/5-2012). The following variables will be included: Demographics, maternal age, gestational age, GMFCS, and comorbidities. Demographic data will include gender, socio-economic status, and Aboriginal and Torres Strait Islander status.

Research Area/s: Causation, Prevention, Registers, Big Data

Chief Investigators:

  • Emma Waight – Cerebral Palsy Alliance Research Institute
  • Dr Hayley Smithers-Sheedy – Cerebral Palsy Alliance Research Institute
  • Dr Sarah McIntyre – Cerebral Palsy Alliance Research Institute
  • Dr Sue Woolfenden – Sydney Children’s Hospital Network, The University of New South Wales
  • Claire Galea – Cerebral Palsy Alliance Research Institute

Associate Investigators: Prof Nadia Badawi, Michael De Lacy, Dr Catherine Gibson, Heather Scott, Kirsty Bartlett-Clarke, Dr Eliza Maloney, Dr Sue Reid, Prof Dinah Reddihough, Linda Watson, Shona Goldsmith, A/Prof Eve Blair

Funding information: NHMRC (1144566, 1113806,1111270), Australasian Cerebral Palsy Clinical Trials Network, 2019-2022

Find out more about this study

If you would like to find out more about this study please contact: Emma Waight

Email: emma.waight@cerebralpalsy.org.au

Phone: 0468856161

This project will evaluate knowledge, awareness and practice outcomes from a new CMV e-learning module for midwives. This study is a collaboration between Cerebral Palsy Alliance, CMV Australia and the Australian College of Midwives.

Research Area/s: Prevention, Policy/Advocacy

Chief Investigators:

  • Dr Hayley Smithers-Sheedy – Cerebral Palsy Alliance Research Institute
  • Kath Swinburn – Cerebral Palsy Alliance Research Institute
  • Emma Waight – Cerebral Palsy Alliance Research Institute
  • Dr Antonia Shand – The University of Sydney
  • Ruth King – Australian College of Midwives
  • Kate Daly – CMV Australia
  • CMV Midwives CPD Expert Reference Group

Funding information: Cerebral Palsy Alliance Research Foundation (CDG01718), NHMRC (1144566), 2019-2022

Acquired brain injuries (ABIs) account for the overwhelming majority of movement disorders. Electrical stimulation is an established approach for the restoration of muscle movement, but its utility as a therapy has thus far been limited by: poor selectivity in the activation of desired muscles producing unwanted contractions and co-activation of motor and sensory fibres. In this study we focus on solving these two key issues. Targeted stimulation or blocking of fibres that lead to rigidity and pain would alleviate these two major areas of unmet need in cerebral palsy.

Research Area/s: Technology, Treatment

Chief Investigators:

  • Prof Alistair McEwan – University of Sydney
  • Prof Gregg Suaning – University of Sydney
  • Dr Claudia Gschwind – Royal North Shore Hospital
  • Dr Timothy Scott – University of NSW

Funding information: Cerebral Palsy Alliance Research Foundation, 2018-2019

More information about the research:

A population-based, case–control study in NSW Australia which aims to compare the incidence, characteristics and costs of hospital admissions, comorbidities and childhood mortality of admitted cCMV cases and matched controls.

Research Area/s: Causation, Prevention, Registers, Big Data

Chief Investigators:

  • Dr Hayley Smithers-Sheedy – Cerebral Palsy Alliance Research Institute
  • Dr Sarah McIntyre – Cerebral Palsy Alliance Research Institute
  • A/Prof Gulam Khandaker – The University of Sydney
  • A/Prof Camille Raynes-Greenow – The University of Sydney
  • Lloyd Flack – The University of Sydney
  • Dr Phillip Britton – The University of Sydney
  • Prof Nadia Badawi – Cerebral Palsy Alliance Research Institute
  • Claire Galea – Cerebral Palsy Alliance Research Institute
  • Prof Cheryl Jones – The University of Sydney

Funding information: Cerebral Palsy Alliance Research Foundation (CDG01718), NHMRC (1144566), 2016-2020

An exploration of cerebral palsy in higher order multiples

Children born from a multiple birth are at higher risk of cerebral palsy than singletons. This study aims to identify whether higher order multiples (triplets and quadruplets) have a higher risk of cerebral palsy than twins. As triplets and quadruplets are very rare, this study is using international collaboration to increase the number of participants. Data from total population registers of cerebral palsy in both Europe (Surveillance of Cerebral Palsy Europe) and Australia (Australian Cerebral Palsy Register) is being pooled. We will compare prevalence of cerebral palsy between twins, triplets and quadruplets and compare clinical outcomes between the groups.

Research Area/s: Causation, Prevention, Registers, Big Data

Chief Investigators:

  • Dr Sarah McIntyre – Cerebral Palsy Alliance Research Institute
  • Dr Elodie Sellier – CHU de Grenoble, France
  • Dr Hayley Smithers-Sheedy – Cerebral Palsy Alliance Research Institute
  • Shona Goldsmith – Cerebral Palsy Alliance Research Institute

Funding information: Cerebral Palsy Alliance Research Foundation, 2016

In 2017 Cerebral Palsy Alliance Youth Services offered a new social skills program called PEERS®.  The program is designed to improve social skills with the primary objective being to assist individuals to make and maintain friendships. All staff had been trained in the PEERS® program. In this study, we evaluated this service offering for young adults by capturing pre and post measurements through questionnaires and by conducting focus groups at the end of the program.

Research Area/s: Treatment

Chief Investigators:

  • Dr Sarah McIntyre      Cerebral Palsy Alliance Research Institute
  • Dr Hayley Smithers-Sheedy – Cerebral Palsy Alliance Research Institute
  • Dr Ingrid Honan – Cerebral Palsy Alliance Research Institute
  • Ms Kirsten Quinn – Cerebral Palsy Alliance
  • Ms Marita Morgan – Cerebral Palsy Alliance
  • Ms Isabelle Balde – Cerebral Palsy Alliance Research Institute
  • Dr Nicole Sharp – Western Sydney University
  • Dr Elizabeth Laugeson – University of California, Los Angeles

Funding information: 2017-2019

Combining congenital anomaly and cerebral palsy data for a comprehensive investigation into opportunities for prevention: The Comprehensive CA-CP Study

Congenital anomalies can occur in any part of the body, for example cleft palate or a heart defect. Children with congenital anomalies have a higher risk of CP. This international data linkage study aims to better understand the association between congenital anomalies and CP. We are pooling high quality data from regions of Europe and Australia to create the largest dataset of its kind in the world. This will allow us to explore the anomalies present in children with CP, their clinical outcomes, explore pathways to CP via anomalies, and identify the risk of CP for children with specific anomalies.

Research Area/s: Causation, Prevention, Registers, Big Data

Chief Investigators:

  • Shona Goldsmith – Cerebral Palsy Alliance Research Institute
  • Dr Sarah McIntyre – Cerebral Palsy Alliance Research Institute
  • A/Prof Guro L. Andersen – The Cerebral Palsy Register of Norway, Norway
  • A/Prof Eve Blair – Telethon Kids Institute, Perth
  • Dr Catherine Gibson – South Australian Birth Defects Register, Adelaide
  • Heather Scott – South Australian Birth Defects Register, Adelaide
  • Dr Hayley Smithers-Sheedy – Cerebral Palsy Alliance Research Institute
  • Prof Nadia Badawi – Cerebral Palsy Alliance Research Institute
  • Dr Guiomar Garcia Jalon – Queen’s University Belfast, UK
  • A/Prof Ester Garne – Hospital Lillebaelt Kolding, Denmark
  • The Comprehensive CA-CP Study Group

Funding information: Cerebral Palsy Alliance Research Foundation (PG1215, PG2816), NHMRC (1113806, 1111270), 2015-2019

More information about the research:

Snapshot of Completed Projects

Eyes on Communication: A Delphi Study to build consensus on content of clinical guidelines for assessment and implementation of eye-gaze control technology for children and adults with cerebral palsy

The overall aim of the Eyes on Communication body of work led by Dr Karlsson it to improve communication, play, leisure, social, work and participation outcomes for those with severe cerebral palsy with complex communication needs who need eye-gaze control technology. The specific aim of this component of this project is to develop clinical guidelines for eye-gaze control technology implementation, including assessment, set up, communication partner instruction and evaluation to support service provision for children and youth with cerebral palsy. The Delphi survey, along with available literature, is Integral to building consensus to inform the content of the guidelines.

Research Area/s: Technology

Chief Investigators:

  • Dr Petra Karlsson – Cerebral Palsy Alliance Research Institute

Associate Investigators: Dr Margaret Wallen, Dr Michael Clarke, Dr Elegast Monbaliu, A/Prof Kate Himmelmann, Mr Tom Griffiths, Mrs Claire Galea, Mrs Rene Pereskles, Mrs Abigail Allsop, Ms Saranda Bekteshi

Funding information: Perpetual; Roger Montgomery Family Trust, 2018

Cerebral palsy after assisted reproductive technology: a cohort study

Children conceived with assisted reproductive technology (IVF and ICSI) may have a higher risk of developing CP. This study examined the relationship between assisted reproductive technology and CP in a cohort of children born 1994-2002 in Western Australia. Birth prevalence of CP was doubled in children born after assisted reproductive technology. Two factors, preterm birth and multiple births, accounted for most of the increased risk of CP. Recent changes in clinical practice in Australia, in particular the increase in single embryo transfers, may change the association between assisted reproductive technology and CP. This association will be tracked over time.

Research Area/s: Causation, Prevention, Registers, Big Data

Funding information: Cerebral Palsy Alliance Research Foundation (PG1215), NHMRC (1113806, 1111270, 1090648, 211930), 2015-2018

More information about the research:

2nd International Survey of Cerebral Palsy Registers and Surveillance Systems

In 2014, we conducted a survey of all cerebral palsy registers and surveillance systems around the world. This updated and extended our first survey, from 2008. We identified nearly 40 registers around the world. These programs aim to be a resource for research and surveillance of CP. All registers are committed to research collaboration. Collaboration is particularly important to answer research questions where individual registers do not have a sufficient number of cases for meaningful research. While the methods between registers vary, we found 17 core data items that should be included in new registers as they are established.

Research Area/s: Causation, Prevention, Policy/Advocacy, Registers, Big Data

Chief Investigators:

  • Shona Goldsmith – Cerebral Palsy Alliance Research Institute
  • Dr Sarah McIntyre – Cerebral Palsy Alliance Research Institute
  • Dr Hayley Smithers-Sheedy – Cerebral Palsy Alliance Research Institute
  • A/Prof Eve Blair – Telethon Kids Institute, Perth
  • Prof Christine Cans
  • Linda Watson – Western Australian Register of Developmental Anomalies, Perth
  • Prof Marshalyn Yeargin-Allsopp – National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, USA

Funding information: Cerebral Palsy Alliance Research Foundation, 2014

More information about the research:

Other projects we’re involved with

Remarkable is Australia’s first accelerator for startups who harness technology to create life changing solutions for people with disability.

Remarkable supports startups through a 16-week accelerator program which equips early-stage companies with seed funding, as well as the knowledge, skills and tools needed to become commercially viable businesses delivering positive social impact. Startups are given $35,000 seed funding, and supported with mentoring, weekly masterclasses, pitch coaching, workspace at the Sydney Startup Hub, as well as access to corporate and investor networks.

Since March 2016, Remarkable has intensively supported 70+ founders from 26 startups.

Projects in Low- and Middle-Income Countries (LMICs)

The Cerebral Palsy Alliance Research Foundation (CPARF) is committed to the prevention, treatment and cure of cerebral palsy globally.

Together with Dr Gulam Khandaker, CPARF is advancing the knowledge base of cerebral palsy aetiology and risk factors through creating international, multi-centre registers of children with cerebral palsy in low- and middle-income countries (LMICs). This is facilitating the establishment of a global network for cerebral palsy in LMICs through strong international collaborations, research, local capacity building and the development of relevant, culturally appropriate, cost-effective strategies and models for early diagnosis, interventions and service delivery.

The Bangladesh Cerebral Palsy Register (BCPR), the first population-based LMIC cerebral palsy register, is generating novel data and serving as the backbone for several projects including the establishment of registers utilising the same model in other LMICs including Indonesia, Nepal and Sri Lanka, exploration of health related quality of life of adolescents with cerebral palsy, community-based early intervention and the use of General Movements Assessment for early diagnosis of cerebral palsy in low resource settings.