Abstract
Background
Cerebral palsy (CP) is a leading cause of motor developmental disability in children. Generating epidemiological data on CP could enable early diagnosis, intervention, and translational research. We aim to establish a Korean network and online data repository for CP called the Korean Cerebral Palsy Registry (KCPR).
Methods
The KCPR is a nationwide, multicentre, prospective cohort study designed as a 20-year longitudinal follow-up of approximately 800 children with CP. Institution-based surveillance mechanisms will be adopted for the registration of children with CP aged less than 7 years to participate in KCPR. The data collection form of the KCPR will comprise diagnostic information, risk factors, extent of disability, genetic data, quality of life, socioeconomic status, functional levels according to life cycle stages, and patterns of healthcare utilisation, including rehabilitation. The study objectives include (1) identifying the pathological characteristics of CP along with their medical, social, economic, and psychological needs and challenges; (2) using data accumulated from prospective tracking of the function and quality of life of children with CP to develop comprehensive service plans and policies that integrate medical care, special education, and welfare; and (3) conducting intervention cohort studies to establish guidelines for the provision of standardised rehabilitative medical services.
Discussion
The establishment of KCPR is crucial to delivering systematic and comprehensive services in the medical, educational, and social sectors throughout the lifecycle of children with CP. KCPR aims to enhance the diagnostic, rehabilitative, and educational approaches for children with CP. Ultimately, this initiative will contribute to advancements in the health and welfare of children with CP.