Severance Hospital said it will launch a nationwide registry to collect clinical information on children with cerebral palsy from birth to diagnosis and treatment status in Korea.
Severance Hospital unveiled its plans on Tuesday to initiate the Korean Cerebral Palsy Registry Project, aimed at enhancing rehabilitation medical services for children afflicted with cerebral palsy.
This collaborative project encompasses 41 institutions including Samsung Medical Center, Pusan National University Hospital, and Chungnam National University Hospital.
The three-year project will receive 250 million won annually in funding from the Kun-hee Lee Center for Child Cancer & Rare Disease.
The project comes with an online-based registration system allowing for easy entry of various clinical information.
The research team plans to collect medical information related to cerebral palsy as well as social, economic, and psychological problems of patients.
The data collected through the project will be used to develop treatment guidelines, social services, and policies for children with cerebral palsy.
Cerebral palsy is a common cause of pediatric movement disorders, resulting from structural or functional brain damage during brain development, and can be accompanied by sensory, cognitive, communication, and secondary musculoskeletal problems. The illness requires continuous management and medical support during the child’s development process.
Cerebral palsy data collection initiatives are already in progress in several other countries. In Europe, the Surveillance of Cerebral Palsy in Europe (SCPE) has been operational since 1998, while Australia has the Australian Cerebral Palsy Register (ACPR) established at the federal level in 2008, dedicated to the collection and organization of data. The U.S. boasts the Cerebral Palsy Research Registry (CPRR), launched in 2008 through collaboration between collaboration between Northwestern University, Chicago Rehabilitation Hospital, and the University of Chicago.
Nonetheless, Korea still lacks a comprehensive cerebral palsy registration system, and there has been a notable absence of thorough data compilation and analysis. Consequently, this gap in information hinders the effective provision of rehabilitation medical services.
"Through the registry project, we plan to identify various problems and needs experienced by children with cerebral palsy," said Professor Rha Dong-wook of the Department of Rehabilitation at Severance Hospital, who is the head of the study. "We will strive to successfully complete the project so that it can help to advance rehabilitation medical guidelines and policies."
The project will be conducted in collaboration with the Korean Society of Pediatric Rehabilitation and Developmental Medicine. To ensure the project's success, workshops for research practitioners have been held since June, and patient enrollment began this month.