Korean Cerebral Palsy Registry (KCPR): study rationale and protocol of a multicentre prospective cohort study.

Abstract

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). 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. 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.