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European and Australian Cerebral Palsy Surveillance Networks Working Together for Collaborative Research
Elodie Sellier1,2, Sarah McIntyre3,4, Hayley Smithers-Sheedy3,4
1Université Grenoble Alpes, CNRS, Grenoble INP, CHU Grenoble, France.
Neuropediatrics
|January 8, 2020
Summary
Cerebral palsy (CP) prevalence is decreasing across Europe and Australia, with similar child characteristics observed between the Surveillance of Cerebral Palsy in Europe (SCPE) and the Australian Cerebral Palsy Register (ACPR). These findings offer crucial insights for families and healthcare systems.
Area of Science:
- Epidemiology of neurodevelopmental disorders
- Public health surveillance systems
- Child neurology and rehabilitation
Background:
- Cerebral palsy (CP) affects children globally, necessitating robust data collection and comparison between major registries.
- Understanding variations and similarities in CP characteristics and prevalence across different geographical regions is vital for targeted interventions.
- The Surveillance of Cerebral Palsy in Europe (SCPE) and the Australian Cerebral Palsy Register (ACPR) are key networks for CP research.
Purpose of the Study:
- To compare the goals, methods, and working practices of the SCPE and ACPR.
- To describe and compare the characteristics of children with cerebral palsy (CP) included in both registries.
- To compare the prevalence of CP as recorded by the SCPE and ACPR.
Main Methods:
- Comparative analysis of key documents and data from the SCPE and ACPR.
- Inclusion of children born between 1993-2009 for ACPR data and 1980-2003 for SCPE data.
- Comparison of descriptive profiles, motor types, severity, gestational age, and associated impairments.
Main Results:
- SCPE contributed 10,756 cases; ACPR contributed 6,803 cases.
- Distributions of motor type, severity, and gestational age were similar, with noted differences in the lowest gestational age category (20-27 weeks) and severe vision impairment between registries.
- CP prevalence rates were comparable across birth weight groups and generally declined over time, with an exception for moderately low birth weight in ACPR.
Conclusions:
- The SCPE and ACPR exhibit similar characteristics, strengthening cross-continental comparisons of CP data.
- Both networks consistently observe a decreasing trend in CP prevalence, a significant finding for public health.
- These findings support the importance of ongoing surveillance and provide valuable information for families and healthcare systems managing CP.
