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Open Access Highly Accessed Study protocol

Australian Cerebral Palsy Child Study: protocol of a prospective population based study of motor and brain development of preschool aged children with cerebral palsy

Roslyn N Boyd128*, Rachel Jordan1, Laura Pareezer1, Anne Moodie3, Christine Finn1, Belinda Luther3, Evyn Arnfield1, Aaron Pym1, Alex Craven1, Paula Beall1, Kelly Weir1, Megan Kentish2, Meredith Wynter2, Robert Ware56, Michael Fahey4, Barry Rawicki4, Lynne McKinlay1 and Andrea Guzzetta7

Author Affiliations

1 Queensland Cerebral Palsy and Rehabilitation Research Centre, School of Medicine, Faculty of Health Sciences, The University of Queensland, Brisbane, Australia

2 Department of Rehabilitation, Queensland Cerebral Palsy Health Service, Royal Children’s Hospital, Brisbane, Herston, Australia

3 Department of Rehabilitation, The Royal Children’s Hospital, Melbourne, Australia

4 Department of Paediatrics, Monash University, Clayton, VIC, Australia

5 Queensland Children’s Medical Research Institute, The University of Queensland, Queensland, Australia

6 School of Population Health, The University of Queensland, Queensland, Australia

7 Department of Developmental Neuroscience, Stella Maris Scientific Institute, Pisa, Italy

8 Queensland Cerebral Palsy and Rehabilitation Research Centre, Royal Brisbane and Women’s Hospital, Level 7, Block 6, Herston, QLD, 4029, Australia

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BMC Neurology 2013, 13:57  doi:10.1186/1471-2377-13-57

Published: 11 June 2013

Abstract

Background

Cerebral palsy (CP) results from a static brain lesion during pregnancy or early life and remains the most common cause of physical disability in children (1 in 500). While the brain lesion is static, the physical manifestations and medical issues may progress resulting in altered motor patterns. To date, there are no prospective longitudinal studies of CP that follow a birth cohort to track early gross and fine motor development and use Magnetic Resonance Imaging (MRI) to determine the anatomical pattern and likely timing of the brain lesion. Existing studies do not consider treatment costs and outcomes. This study aims to determine the pathway(s) to motor outcome from diagnosis at 18 months corrected age (c.a.) to outcome at 5 years in relation to the nature of the brain lesion (using structural MRI).

Methods

This prospective cohort study aims to recruit a total of 240 children diagnosed with CP born in Victoria (birth years 2004 and 2005) and Queensland (birth years 2006–2009). Children can enter the study at any time between 18 months to 5 years of age and will be assessed at 18, 24, 30, 36, 48 and 60 months c.a. Outcomes include gross motor function (GMFM-66 & GMFM-88), Gross Motor Function Classification System (GMFCS); musculoskeletal development (hip displacement, spasticity, muscle contracture), upper limb function (Manual Ability Classification System), communication difficulties using Communication and Symbolic Behaviour Scales-Developmental Profile (CSBS-DP), participation using the Paediatric Evaluation of Disability Inventory (PEDI), parent reported quality of life and classification of medical and allied health resource use and determination of the aetiology of CP using clinical evaluation combined with MRI. The relationship between the pathways to motor outcome and the nature of the brain lesion will be analysed using multiple methods including non-linear modelling, multilevel mixed-effects models and generalised estimating equations.

Discussion

This protocol describes a large population-based study of early motor development and brain structure in a representative sample of preschool aged children with CP, using direct clinical assessment. The results of this study will be published in peer reviewed journals and presented at relevant international conferences.

Trial registration

Australia and New Zealand Clinical Trials Register (ACTRN1261200169820)

Keywords:
Cerebral palsy; Protocol; Longitudinal cohort; Motor development; Brain structure and function; Communication; Hip displacement; Preschool age; Gross motor function