Transforming Early Detection for Cerebral Palsy

The Challenge

Enabling access to early intervention for children with Cerebral Palsy (CP) relies on timely and accurate neonatal diagnosis. Current screening programs in Australian neonatal intensive care units (NICUs) and special care nurseries detect only around 30% of infants who will later be diagnosed with CP. This leaves roughly 70% undiagnosed during the crucial early period for intervention.

Early detection is limited because existing programs focus on high-risk groups (e.g., infants born before 29 weeks gestation or with certain conditions) and are constrained by staffing. While the General Movements Assessment (GMA) is an effective tool, its use is restricted to specifically trained making widespread screening costly.

Project Overview

The Early General Movements Screening Feasibility Pilot is a prospective cohort study involving 836 infants admitted for over 48 hours to:

• Children’s Hospital Westmead NICU
• John Hunter Children’s Hospital NICU
• Blacktown Hospital Special Care Nursery (SCN)

Families will be invited to download the Baby Moves app to record videos of their infants. Videos will be assessed by both expert and newly trained scorers, and families can consent for their data to support machine learning development for automated GMA scoring.

The study will measure:

• ‍Agreement rates between newly trained scorers and expert scorers‍
• Resource requirements for an expanded CP screening program.

Measuring Impact

Hearts & Minds measures its impact across six core categories as developed by the Association of Australian Medical Research Institutes. Key highlights include:

Advancing Knowledge

• ‍Collaborations: NSW Health is a key stakeholder in the study, and Deakin University contributes to the development of the machine learning model for CP screening‍
• Knowledge sharing: Presentations to hospital teams and GMA networks (Allied Health and Medical)‍
• Recognition: Principal Investigator Dr Cathryn Crowle is a recipient of the Kids Research Allied Health Clinician Researcher Fellowship from the Sydney Children's Hospitals Network for work on this project.

Research Capacity Building

• ‍Supporting diverse talent: Project designed and led entirely by women (100%), including mid-career and early career researchers‍
• Mentorship: Experienced researchers mentor early career scorers and clinical staff‍
• External committees: Lead investigators participate in national GMA networks and the General Movements Trust.

Health Impacts

• ‍Improved outcomes: Earlier access to interventions and NDIS support enhances infant and family wellbeing‍
• Optimised function: Optimising infant function during the period of rapid brain growth is likely to reduce severity and allow preventive interventions for common musculoskeletal complications‍
• Better technology: Scored GMA videos support machine learning for automated screening‍
• Feasible home screening: Baby Moves app allows parents to record videos at home.

Social Impacts

• ‍Improved access: Home-based screening benefits families in rural/remote areas‍
• Health literacy: Broader screening increases awareness of neurodevelopmental impairments.

Economic Impacts:

• ^‍Reduced staffing costs: Training early career clinicians to score videos in addition to experienced/senior clinicians helps to lower staffing costs‍
• Long-term savings: Universal screening allows earlier interventions, reducing future treatment costs.

Informing Decisions:

• ‍Study-driven changes: Study outcomes could guide government policy on universal newborn CP screening‍
• Policy change: Trialling expanded screening may lead to permanent policy changes in high-risk settings.

This project is transforming early detection for infants at risk of CP. By training more clinicians, testing mobile app-based screening, and contributing to automated scoring development, the study improves access to early diagnosis, interventions, and long-term outcomes for children and families.

‍Funding support from Hearts and Minds Investments, for further information and updates, visit Cerebral Palsy Alliance.