Severance Hospital Launches 'Cerebral Palsy Registry Establishment Project'

Severance Hospital announced on the 5th that it will launch a nationwide registry project to collect clinical information such as birth, diagnosis, and treatment status of children with cerebral palsy in Korea. This project was established to advance rehabilitation medical services for children with cerebral palsy.

The "Korean Cerebral Palsy Registry Establishment Project," led by Severance Hospital, involves 41 institutions including Samsung Seoul Hospital, Pusan National University Hospital, and Chungnam National University Hospital, and will be conducted over three years. This project receives annual funding of 250 million KRW from the Lee Kun-hee Pediatric Cancer and Rare Disease Foundation.

Professor Na Dong-wook

A key feature of this project is the establishment of an online-based registration system that allows easy input of various clinical information. The research team plans to comprehensively identify not only medical information related to cerebral palsy but also patients’ social, economic, and psychological issues. The data collected through this project will be used to develop clinical guidelines, social services, and policies for children with cerebral palsy.

Cerebral palsy is known as the most common cause of pediatric motor disability, occurring in approximately 2 to 2.5 per 1,000 children. It results from structural or functional brain damage during brain development, causing abnormalities in physical motor functions. Additionally, symptoms such as sensory, cognitive, communication difficulties, and secondary musculoskeletal problems may accompany it, requiring continuous management and medical support throughout children’s developmental processes.

Internationally, cerebral palsy data registry projects are already actively underway. In Europe, the Surveillance of Cerebral Palsy in Europe (SCPE) has been established since 1998. In Australia, the Australian Cerebral Palsy Register (ACPR) was established at the federal government level in 2008 to collect and organize data. In the United States, since 2008, Northwestern University, the Rehabilitation Institute of Chicago, and the University of Chicago have jointly launched the Cerebral Palsy Research Registry (CPRR) to build a cerebral palsy registry system.

However, in Korea, there has not yet been a systematic cerebral palsy registry system, resulting in a lack of in-depth data organization and analysis, and insufficient information to provide effective rehabilitation medical services.

Professor Na Dong-wook of the Department of Rehabilitation Medicine at Severance Hospital, the principal investigator, stated, “Through the registry establishment project, we plan to identify the various problems and needs experienced by children with cerebral palsy,” adding, “We will strive to successfully complete the project to help advance rehabilitation medical guidelines and policies.”

Meanwhile, this project is being conducted in collaboration with the Korean Society of Pediatric Rehabilitation Medicine. To ensure successful progress, a research staff workshop has been held since June, and patient registration began this month.

This content was produced with the assistance of AI translation services.