Severance Hospital is launching a nationwide registry project to collect clinical data on children with cerebral palsy from birth to diagnosis and treatment. The project is designed to upgrade rehabilitation medical services for children with cerebral palsy.
According to Severance Hospital on September 5th, the project to build a Korean cerebral palsy registry will be conducted for three years, involving 41 institutions including Samsung Medical Center, Busan National University Hospital, and Chungnam National University Hospital.
The project is supported with 250 million won per year from the Lee Kun-hee Child Cancer and Rare Disease Project. The project is characterized by an online-based registration system that makes it easy to enter various clinical information.
The research team plans to identify medical information related to cerebral palsy as well as social, economic, and psychological issues of patients.
Cerebral palsy is the most common cause of the children motor disability, occurring in 2 to 2.5 per 1000 children. It is characterized by abnormalities in the body's motor functions due to structural or functional brain damage during the brain's development.
It may also be accompanied by symptoms such as sensory, cognitive, communication, and secondary musculoskeletal problems, which thus requires ongoing management and medical support throughout the children's development.
There are already active efforts to build data on cerebral palsy in other countries. In Europe, the Surveillance of Cerebral Palsy in Europe (SCPE) has been in place since 1998, and in Australia, the Australian Cerebral Palsy Register (ACPR) was built at the federal level in 2008.
However, there is still no systematic cerebral palsy registration system in Korea, and in-depth data collection and analysis has not been carried out, leading to a lack of information for effective rehabilitation medical service provision.
"Through the project to build the registry, we plan to identify various problems and needs of children with cerebral palsy," said Dr Rha Dong-Wook, professor of rehabilitation at Severance Hospital and the principal investigator of the project, "We will strive to successfully complete the project to help advance rehabilitation medical guidelines and policies.“
[WIKI KOREA=Cho Pil Hyun, Staff Reporter]
chop23@wikileaks-kr.org
