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Updated description of cerebral palsy
Bernard Dan1,2,3, Peter Rosenbaum1,4, Lucinda Carr1,5
1Mac Keith Press, London, UK.
Insights
A new, inclusive description of cerebral palsy (CP) was developed with global stakeholders. This updated framework aims to improve care, research, and policy for individuals with CP throughout their lives.
Area of Science:
- Neurology
- Developmental Pediatrics
- Public Health
Background:
- Cerebral palsy (CP) is a motor disorder from early brain injury.
- Understanding of CP has advanced through genetics, inflammation, and neurophysiology research.
- Global studies and societal shifts emphasize lifelong needs and inclusive frameworks.
Purpose of the Study:
- To present an updated, collaborative, and inclusive description of cerebral palsy (CP).
- To integrate diverse stakeholder perspectives, including individuals with CP, families, clinicians, and researchers.
- To provide a framework for advancing care, participation, and inclusion of individuals with CP.
Main Methods:
- Collaborative, multidisciplinary process involving extensive stakeholder engagement.
- Data collection through surveys, interviews, focus groups, and workshops.
- Global dialogue combining lived experience with clinical and scientific expertise.
Main Results:
- An updated clinical description of CP was developed.
- 26 specific terms were annotated for clearer, inclusive understanding.
- Accessible plain-language and single-sentence summaries were created.
Conclusions:
- The updated CP description serves as a guide for clinical practice, research, and policy.
- Enhanced understanding and inclusivity are key to advancing CP care.
- Lifelong support and participation for individuals with CP are essential.
Abstract:
Cerebral palsy (CP) is a widely used descriptive label for a spectrum of motor impairments caused by non-progressive brain injury or malformation during early development. Recent advances in genetics, inflammation research, and neurophysiology have refined scientific understanding of CP, and studies in diverse global contexts, including low- and middle-income countries, have broadened knowledge of its clinical presentation. Shifting societal perspectives, particularly those informed by individuals with lived experience, have challenged ableist assumptions and promoted conceptual frameworks that are more inclusive. Growing recognition of the lifelong needs of adults with CP has further emphasized the necessity of appropriate services across the lifespan. This manuscript presents an updated description of CP, developed through a collaborative, multidisciplinary process integrating stakeholders' perspectives. A comprehensive stakeholder analysis and mapping strategy ensured wide representation, including individuals with CP, families, clinicians, researchers, and advocacy organizations. Data were collected using surveys, interviews, focus groups, and workshops, enabling a global dialogue that combined lived experience with clinical and scientific expertise. An annotation of 26 specific terms of the updated clinical description supports a clearer and more inclusive shared understanding of CP. We also present a more accessible plain-language version of the description, as well as a single-sentence summary. The updated description is intended as a framework to guide clinical practice, research, and policy, to advance the care, participation, and inclusion of individuals with CP.
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