Understanding the Early Natural History of Cerebral Palsy

This study is an observational study, and there is no intervention involved. The study aims to describe the early natural history of cerebral palsy (CP) by mapping the development of infants with, or at-risk of CP, over the first two years of life. Infants will be recruited before they reach 12 months of age, and will have assessments every 3-6 months until they reach 24 months. Appointments will be conducted by an experienced clinicians in the infant’s home or in centre based sessions. These are standardised assessments that will help track different aspects of development for babies with cerebral palsy, such as: movement and motor abilities, musculoskeletal development, neurodevelopment, vision, sleep, cognition, speech and language development, feeding, social-emotional abilities, parent outcomes, health resource use, general function and demographics. A selection of the following tests will be used in this study: Peabody Developmental Motor Scales-2, Gross Motor Function Measure-66, Hand Assessment for Infants, Mini Assisting Hand Assessment, Assisting Hand Assessment, Gross Motor Function Classification System E&R, Mini-Manual Ability Classification System, Hammersmith Infant Neurological Examination, Neuroimaging (if available), Australian Cerebral Palsy Register Cerebral Palsy Description Form (Part 1), Modified Tardieu Scale, Australian Spasticity Assessment Scale, Hip X-ray (if available), Ricci and Preverbal Visual Assessment, Sleep Disturbance Scale for Children, Pediatric Evaluation of Disability Inventory Computer Adaptive Test, Bayley Scales of Infant and Toddler Development (III or Low Motor Low Vision vsersion) - Cognition, Speech and Language domains, Dysphagia Disorder Survey, Infant Toddler Social Emotional Assessment, Depression Anxiety and Stress Scales-21, Parenting Stress Index, Health Resource Use, Medicare and Pharmaceutical Benefits Scheme data, and Perinatal and socio-demographic information.