Samsung's $226 million donation revives pediatric research in Korea, gives 'researchers a reason to stay'

Pediatrics has long been one of the loneliest corners of Korean medicine, with few patients per disease, little state research funding and a shrinking pool of doctors willing to stay.

Five years ago, that began to change when the family of the late Samsung Chairman Lee Kun-hee gave Seoul National University Hospital (SNUH) 300 billion won ($226 million). 

The donation paved the way for the Child Cancer & Rare Disease Project, which spans pediatric cancer, rare diseases and collaborative research.

“The donation has been both a lifeline and a godsend,” said Moon Jin-soo, vice president for public health at the hospital and head of the project's collaborative research division. “Without it, research in our field would have ground to a halt, and it would have been difficult to nurture the next generation of researchers.”

“Pediatrics is a niche within a niche, and there is almost no government research funding,” Moon continued. “I was stunned by the donation. My first reaction was worry — where and how we should spend it, and whether we could actually produce results.”

Those results, Moon said, are now beginning to emerge.

The project’s leaders chose to invest in long-term research rather than immediate patient support, Moon said.

“Our priority was to establish research infrastructure and strengthen collaboration,” Moon said. “We wanted to produce data that could drive changes in national health policies and ensure that children would benefit for years to come. If we had used the money to cover treatment costs and living expenses, we might have exhausted all 300 billion won within two years.”

“Pediatric diseases vary widely, and patient numbers are limited,” Moon said. “A single hospital cannot easily build the evidence needed for diagnosis and treatment. So we brought together 751 researchers from 101 institutions nationwide, including physicians and specialists in genetics, life sciences, statistics and data science.”

Researchers are now studying patient cohorts covering 85 diseases, including pediatric Crohn’s disease; gastrointestinal disorders; short bowel syndrome; skull anomaly syndromes; achondroplasia, the most common form of dwarfism; and childhood heart disease.

Seven national university hospitals that joined the project have amassed data from millions of pediatric patients. The data has helped researchers identify subtle changes in electrocardiograms that may signal a patient’s condition is about to worsen, according to the hospital.

A separate project is tracking the financial burdens and changes in quality of life experienced by about 600 parents and caregivers.

Kim Eun-na, a professor of pediatric pathology at SNUH, created the so-called pediatric pathology atlas, a collection of 4,067 tissue slides from 1,536 children with diseases including cancer. The atlas, which has drawn about 3,600 visitors, has become a valuable resource for doctors and researchers nationwide in diagnosis, treatment and research.

Her team also identified a gene behind hereditary hearing loss and outlined potential corrective treatments. They also established new treatment guidelines for pediatric kidney disease and developed a pediatric laryngeal and tracheal stent that earned a rare medical device designation from the Ministry of Food and Drug Safety.

By the end of last year, the donation-funded projects had produced 142 research papers, including studies published in international journals such as Nature Communications. A total of 20,903 patients received diagnoses, and 13,723 underwent treatment. The initiative plans to expand into international collaborative research and broader patient treatment.

But the numbers tell only part of the story.

“The donation served as a bulwark against the collapse of pediatric care, an essential medical service,” Moon said. “It gave researchers a reason to stay.”

For Moon, the gift also carries a deeper meaning.

“Chairman Lee's dedication to preserving life and giving back has left its mark on countless patients, families, researchers and hospitals,” Moon said. “On the sixth anniversary of his death, we are reminded of that commitment. We intend to share our results and complete the remaining projects to carry his legacy forward.”

BY SHIN SUNG-SIK [[email protected]]