Cancer Res Treat.  2025 Jan;57(1):19-27. 10.4143/crt.2024.218.

The Cancer Clinical Library Database (CCLD) from the Korea-Clinical Data Utilization Network for Research Excellence (K-CURE) Project

• Lee S
• Choi YH
• Kim HM
• Hong MA
• Park P
• Kwak IH
• Kang YJ
• Choi KS
• Kong HJ
• Cha H
• Kim HJ
• Ryu KS
• Jeon YS
• Kim H
• Jung JM
• Im JS
• Chae H

• KMID: 2564577
• DOI: http://doi.org/10.4143/crt.2024.218

Abstract

The common data model (CDM) has found widespread application in healthcare studies, but its utilization in cancer research has been limited. This article describes the development and implementation strategy for Cancer Clinical Library Databases (CCLDs), which are standardized cancer-specific databases established under the Korea-Clinical Data Utilization Network for Research Excellence (K-CURE) project by the Korean Ministry of Health and Welfare. Fifteen leading hospitals and fourteen academic associations in Korea are engaged in constructing CCLDs for 10 primary cancer types. For each cancer type-specific CCLD, cancer data experts determine key clinical data items essential for cancer research, standardize these items across cancer types, and create a standardized schema. Comprehensive clinical records covering diagnosis, treatment, and outcomes, with annual updates, are collected for each cancer patient in the target population, and quality control is based on six-sigma standards. To protect patient privacy, CCLDs follow stringent data security guidelines by pseudonymizing personal identification information and operating within a closed analysis environment. Researchers can apply for access to CCLD data through the K-CURE portal, which is subject to Institutional Review Board and Data Review Board approval. The CCLD is considered a pioneering standardized cancer-specific database, significantly representing Korea’s cancer data. It is expected to overcome limitations of previous CDMs and provide a valuable resource for multicenter cancer research in Korea.

Keyword

Common data model; Clinical data warehouse; Multicenter study; Healthcare data; Neoplasms; Database

Figure

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  Fig. 1. Hospitals participating in the Korea-Clinical Data Utilization Network for Research Excellence (K-CURE) project. Fifteen hospitals across different regions in Korea are in the process of establishing Cancer Clinical Library Databases (CCLDs) as a part of the K-CURE project.

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  Fig. 2. Overview of the two-step Cancer Clinical Library Database (CCLD) data item standardization process. In the first step, items were listed based on their importance for cancer research in collaboration with academic societies. In the second step, the final items have been selected considering the feasibility of collection by hospitals. followed by the creation of a standard schema for the CCLDs by the Cancer Data Standards and Quality Committee. EMR, electronic medical record; K-CURE, Korea-Clinical Data Utilization Network for Research Excellence.

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  Fig. 3. Storage of patient clinical information. Patient clinical data is collected and stored in the respective tables throughout the entire diagnosis, treatment, and follow-up process.

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  Fig. 4. Overview of cancer type-specific hospital Cancer Clinical Library Database (CCLD) establishment process. Hospitals extract cancer patient data from their built-in clinical data warehouses (CDW) and store the information in a cancer type-specific CCLD. ICD-O-3, International Classification of Diseases for Oncology, 3rd edition.

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  Fig. 5. Initial collection and update of data for Cancer Clinical Library Databases (CCLDs). Initial collection and update of data for CCLDs. A CCLD initially collects patient clinical data from 2010 to the year before its establishment. Following its establishment, the CCLD is updated to include. Subsequent follow-up data as well as data for newly registered patients on an annual basis.

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  Fig. 6. Procedure for using Cancer Clinical Library Databases (CCLDs) for multicenter cancer research. Researchers are allowed to access to CCLD data after obtaining Institutional Review Board (IRB) and Data Review Board (DRB) approval. Analyses on the data may only be performed in a secured environment. K-CURE, Korea-Clinical Data Utilization Network for Research Excellence.

Reference

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