'CARE-KIDS Cohort' Launches Follow-Up Study on Pediatric Inflammatory Bowel Disease

Tracking Treatment Outcomes and Developing Biomarkers

The 'CARE-KIDS Cohort' is launching follow-up research to track treatment outcomes for pediatric inflammatory bowel disease and to develop personalized therapies.

'CARE-KIDS Cohort' logo. Seoul National University Hospital

The CARE-KIDS Cohort announced on May 7, 2025, that it will begin full-scale follow-up studies starting in 2025. Focusing on more than 20 university hospitals, the cohort will continue to collect and manage clinical data, as well as blood, tissue, and stool samples from patients, using an e-CRF (electronic case report form) system and a human biobank. Through these efforts, the cohort aims to establish standards for personalized treatment, strengthen biomarker development, and advance precision medicine research.

The CARE-KIDS Cohort is a research project that analyzes treatment outcomes and tracks the long-term progression of pediatric inflammatory bowel disease. The project is led by Professor Shim Jeongok of the Department of Pediatrics at Seoul National University Hospital and is supported by the Lee Gunhee Pediatric Cancer and Rare Disease Overcoming Project. More than 20 major university hospitals in Korea, including Seoul National University Hospital, Korea University Guro Hospital, Severance Hospital, Samsung Medical Center, and Asan Medical Center, are participating. The cohort has been ongoing since 2022 and, now in its fourth year, has grown to become the largest in Asia, with data from 1,041 patients and 5,937 vials of human biological resources collected to date.

Pediatric inflammatory bowel disease (IBD), especially Crohn's disease and ulcerative colitis, has been increasing in incidence in Korea. About 10 to 15 percent of all cases are diagnosed before the age of 18, and the annual incidence of pediatric Crohn's disease has more than doubled over the past 10 years. The incidence of pediatric ulcerative colitis has also been steadily rising, with the age of onset becoming younger. These diseases cause chronic inflammation and can have serious long-term health impacts, but with appropriate treatment, patients can grow up to become healthy members of society.

Professor Shim Jeongok stated, "Given the characteristics of rare and intractable diseases, the CARE-KIDS Cohort ultimately aims to develop into a long-term cohort and to be included in the Korea Disease Control and Prevention Agency's chronic disease management program. We will also strive to ensure that all hospitals nationwide can provide the same level of care through this collaborative research platform."

Meanwhile, Professor Shim Jeongok has been presenting research findings at international academic events such as the Asia-Pacific Society for Pediatric Gastroenterology, Hepatology and Nutrition and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition symposiums. In 2023, she was appointed chair of the Inflammatory Bowel Disease Committee at the Asia-Pacific Society for Pediatric Gastroenterology, Hepatology and Nutrition, further strengthening the global research network.