A research article entitled "Design and Evaluation of an Automated Pediatric Acute Lymphoblastic Leukemia Registry from Clinical Data Warehouses" has been published in BMC Medical Informatics and Decision Making (2026). BMC Medical Informatics and Decision Making is a leading international journal that publishes high-impact research on the development, implementation, and evaluation of medical informatics, clinical decision-making systems, and health information technologies. Our study presents a comprehensive framework for constructing a high-quality, scalable pediatric acute lymphoblastic leukemia (ALL) registry through automated extraction of electronic medical record (EMR)-based real-world data (RWD) from clinical data warehouses (CDWs).

The study developed PeARL (Pediatric ALL Registry using eLectronic medical record-based RWD) by integrating standardized mapping, multivariate transformations, and rule-based natural language processing (NLP) to capture clinically relevant variables from two university-affiliated tertiary-care hospitals in South Korea: Seoul National University Hospital (SNUH) and the Catholic Medical Center (CMC). A total of 1,609 pediatric patients with ALL (663 from SNUH and 946 from CMC) were included. Data quality was systematically evaluated using 228 rules across five dimensions (completeness, validity, accuracy, uniqueness, consistency).

The results showed that the automated data extraction proportion reached 89.7% at SNUH and 75.0% at CMC, with most elements processed through single-field transformations. After applying the quality management process, the overall error rate decreased from 1.858% to 0.001% at SNUH and from 0.129% to 0.001% at CMC, corresponding to an estimated reliability of 99%. Moreover, the registry demonstrated robust multicenter applicability through standardized table specifications and cross-site review, despite structural differences between institutional CDWs.

Overall, the study highlights the potential of a clinically guided, standardized framework as a reproducible and scalable solution for registry construction. By combining structured mapping, multivariate transformation, and rule-based NLP, the proposed approach offers a practical pathway for multicenter research and regulatory-grade real-world evidence generation.

Yoona Choi and Jung-Hyun Won attended the 65th Annual Meeting & Exposition of the American Society of Hematology (ASH), which took place from December 9 to 12, 2023, in San Diego, USA. Annually, the ASH conference brings together healthcare professionals, researchers, clinicians, and academics from around the globe to explore advancements in hematology. This prestigious event not only focuses on the study, diagnosis, treatment, and prevention of blood disorders but also features a variety of social events and opportunities for collaboration and the sharing of insights among experts in the field. Official photos from ASH are available here.

At the 'Outcomes Research—Lymphoid Malignancies: Poster II' session, Yoona Choi, serving as the first author and representing the entire research team, presented a study titled 'Evaluating the Effectiveness and Safety of Prephase Steroid Treatment before Remission Induction Chemotherapy in Pediatric Acute Lymphoblastic Leukemia: A Common Data Model-Based Real-World Data Approach.' This study investigated steroid pretreatment in pediatric acute lymphoblastic leukemia (ALL) patients undergoing remission induction chemotherapy (RIC), with the aim of reducing complications such as tumor lysis syndrome (TLS). Analyzing data from Seoul National University Hospital and Catholic University Seoul St. Mary’s Hospital, the study compared patients who received steroid pretreatment at least seven days before RIC with those who did not. The findings indicated a significant reduction in TLS incidence in the pretreated group. While overall survival rates were higher in this group, the difference was not statistically significant. These results provide important real-world evidence for the effectiveness of steroid pretreatment in reducing TLS risk in pediatric ALL patients.

This study was part of a larger project, funded by a grant from the Ministry of Health and Welfare, aiming to develop a disease registry database for pediatric ALL using real-world data in the clinical data warehouse (CDW) of Seoul National University Hospital and Catholic University Seoul St. Mary’s Hospital, thereby generating real-world evidence for pediatric ALL.