Seoul National University Hospital: 5 Years of Lee Kun-hee Childhood Cancer and Rare Disease Initiative... 22,646 Patients Diagnosed

14,757 Patients Treated... More Than 20 New Rare Diseases Identified
South Korea's First Standard Treatment Protocol for Pediatric Acute Lymphoblastic Leukemia Established... Research Projects Expand to 190

Over the past five years, Seoul National University Hospital has diagnosed 22,646 patients and treated 14,757 through an initiative to overcome childhood cancer and rare diseases, launched with a donation of KRW 300 billion from the family of the late Lee Kun-hee, chairman of Samsung Group. The initiative has also expanded the foundation for precision medicine for children in South Korea, establishing a standard treatment system for childhood cancer and identifying new rare diseases.

The Seoul National University Hospital Support Program for Childhood Cancer and Rare Diseases announced on November 9 that it had achieved these results through September this year. The program held an international symposium that day to share research results from the past five years and discuss directions for future international collaborative research.

Officials pose for a commemorative photo at the International Symposium on the Lee Kun-hee Initiative to Overcome Pediatric Cancer and Rare Diseases on the 9th. Seoul National University Hospital

Launched in April 2021, the initiative is scheduled to run for 10 years, through 2030. The program, established with Seoul National University Children’s Hospital as its lead institution, has pursued the development of diagnostic and treatment technologies for childhood cancer and rare diseases, as well as the creation of nationwide research infrastructure.

In the field of childhood cancer, the program developed South Korea’s first standard treatment protocol for pediatric acute lymphoblastic leukemia. It established treatment strategies by dividing patients into five risk groups and set up a system for monitoring measurable residual disease using genomic analysis and next-generation sequencing (NGS).

In the field of rare diseases, the program identified and diagnosed more than 20 new rare diseases. It established a nationwide diagnostic network through which regional hospitals can send samples and genetic information to a central analysis center, which then provides results within four to six weeks. The program also provides genetic counseling and prenatal diagnosis for families of patients with genetic diseases.

The initiative has also made progress in developing treatment technologies. The precision medicine platform for pediatric solid tumors, “STREAM,” includes more than 60% of pediatric solid tumor patients in South Korea. Seoul National University Hospital has established a system to manufacture CAR-T cells in-house at its GMP facility and, through September this year, manufactured and supplied CAR-T cells for 21 pediatric patients.

Key achievements over five years of the Lee Kun-hee Initiative to Overcome Childhood Cancer and Rare Diseases. Seoul National University Hospital

Research collaboration has also expanded. The number of research projects supported by the program rose from seven in 2021 to 190 this year. As of September this year, 1,411 medical professionals from 185 institutions nationwide were participating, and a total of 57,030 data records had been registered in the childhood cancer and rare disease patient cohorts.

The program plans to expand international collaborative research and advance treatment technologies, including CAR-T. It also intends to develop early diagnosis systems, including rapid genetic testing for infants in intensive care units, genomic screening for newborns, and prenatal diagnosis.

“Because patient numbers are small for each disease and the conditions vary widely, many challenges in childhood cancer and rare diseases are difficult to address through the efforts of individual research institutions alone,” said Chae Jonghee, head of the program. “We will share research findings and clinical experience among experts in South Korea and abroad and strengthen the foundation for international collaborative research.”

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