Korean Cerebral Palsy Registry (KCPR): study rationale and protocol of a multicentre prospective cohort study
Juntaek Hong1, Ja Young Choi2, Jeong Yi Kwon3
1Department and Research Institute of Rehabilitation Medicine, Yonsei University College of Medicine, Seoul, Republic of Korea.
Insights
The Korean Cerebral Palsy Registry (KCPR) establishes a national network for children with cerebral palsy (CP). This prospective study will generate vital epidemiological data for improved diagnosis and intervention.
Area of Science:
- Pediatric Neurology
- Developmental Pediatrics
- Public Health Epidemiology
Background:
- Cerebral palsy (CP) is a primary cause of motor disability in children.
- Epidemiological data is crucial for early diagnosis, intervention, and research in CP.
- Establishing a national registry is essential for comprehensive CP data collection in Korea.
Purpose of the Study:
- To establish the Korean Cerebral Palsy Registry (KCPR), a nationwide network and data repository.
- To facilitate continuous monitoring, analysis, and research on cerebral palsy cases in Korea.
- To support research aimed at understanding CP's characteristics, needs, and improving management.
Main Methods:
- A prospective, multicentre, 20-year longitudinal cohort study.
- Nationwide surveillance across 42 institutions for children with CP (aged <7 years).
- Comprehensive data collection including diagnostics, risk factors, disability, genetics, QoL, and healthcare utilization.
Main Results:
- The KCPR is established as a national data repository for CP in Korea.
- The registry will enable continuous monitoring and analysis of CP cases.
- It will serve as a platform for diverse research projects on CP.
Conclusions:
- The KCPR provides a foundation for advancing CP research and management in Korea.
- Longitudinal data will inform the development of integrated service plans and policies.
- The registry will support intervention studies to establish guidelines for standardized rehabilitative care.
Introduction:
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 And Analysis:
The KCPR is a nationwide, multicentre, prospective cohort study designed to conduct a 20-year longitudinal follow-up of children with CP. Institution-based surveillance involving 42 institutions across the country will be used 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 primary goal of KCPR is to establish a national data repository for CP in Korea, providing a platform for continuous monitoring and analysis of CP cases. Based on its role as a registry, KCPR will support various research projects to enhance the understanding and management of CP. The specific objectives of research projects using KCPR data include: (1) identifying the pathological characteristics of CP and their associated medical, social, economic and psychological needs; (2) using data from prospective tracking of CP children's function and quality of life to develop integrated service plans and policies and (3) conducting intervention cohort studies to establish guidelines for standardised rehabilitative medical services.
Ethics And Dissemination:
The study protocol was approved by the ethics committees of all 42 participating hospitals. Findings from this study will be disseminated in peer-reviewed publications.
