J-CKD-DB: a nationwide multicentre electronic health record-based chronic kidney disease database in Japan

Naoki Nakagawa,Hiromi Kataoka,Hajime Nagasu,Eiichiro Kanda,Takafumi Ito,Motoko Yanagita,Kunihiro Matsushita,Yoshitaka Isaka,Kazuhiko Ohe,Kazuhiko Tsuruya,Shoichi Maruyama,Hitoshi Sugiyama,Ichiei Narita,Hirokazu Okada,Kouichi Tamura,Masaomi Nangaku,Takashi Sügimura ,Hitoshi Yokoyama,Naoki Nakashima,Takashi Wada,Kunihiro Yamagata,Yoshio Terada,Mihoko Okada,Tadashi Sofue,Naoki Kashihara

doi:10.1038/s41598-020-64123-z

Abstract

The Japan Chronic Kidney Disease (CKD) Database (J-CKD-DB) is a large-scale, nation-wide registry based on electronic health record (EHR) data from participating university hospitals. Using a standardized exchangeable information storage, the J-CKD-DB succeeded to efficiently collect clinical data of CKD patients across hospitals despite their different EHR systems. CKD was defined as dipstick proteinuria ≥1+ and/or estimated glomerular filtration rate <60 mL/min/1.73 m2 base on both out- and inpatient laboratory data. As an initial analysis, we analyzed 39,121 CKD outpatients (median age was 71 years, 54.7% were men, median eGFR was 51.3 mL/min/1.73 m2) and observed that the number of patients with a CKD stage G1, G2, G3a, G3b, G4 and G5 were 1,001 (2.6%), 2,612 (6.7%), 23,333 (59.6%), 8,357 (21.4%), 2,710 (6.9%) and 1,108 (2.8%), respectively. According to the KDIGO risk classification, there were 30.1% and 25.5% of male and female patients with CKD at very high-risk, respectively. As the information from every clinical encounter from those participating hospitals will be continuously updated with an anonymized patient ID, the J-CKD-DB will be a dynamic registry of Japanese CKD patients by expanding and linking with other existing databases and a platform for a number of cross-sectional and prospective analyses to answer important clinical questions in CKD care.

Highlights

The Japan Chronic Kidney Disease (CKD) Database (J-CKD-DB) is a large-scale, nation-wide registry based on electronic health record (EHR) data from participating university hospitals
The inclusion criteria of the J-CKD-DB were as follows: (1) age ≥ 18 years old and (2) proteinuria ≥ 1 + and/or estimated glomerular filtration rate
The Multipurpose Clinical Data Registry System (MCDRS) for data extraction and registry has been developed through the Funding Program for World-Leading Innovative R&D on Science and Technology (FIRST Program) by the Japan Society for Promotion of Science; this system allows the efficient collection of clinical data using the SS-MIX2 format[11], which is application-independent, and current use includes community healthcare information systems, backup for disaster, multi-institutional database development, and clinical research

Summary

Introduction

The Japan Chronic Kidney Disease (CKD) Database (J-CKD-DB) is a large-scale, nation-wide registry based on electronic health record (EHR) data from participating university hospitals. To collect clinical data from CKD patients in Japan and address important clinical questions, the Committee for the Working Group for Renal Biopsy Database in the Japanese Society of Nephrology (JSN) established a nationwide, web-based, and prospective registry system in 2007. This led to the development of two registries — one with patients who underwent renal biopsy, called the Japan Renal Biopsy Registry (J-RBR)[7], and the other with those who did not undergo renal biopsy, called the Japan Kidney Disease Registry (J-KDR)[8]. Repeat as necessary -Laboratory test code (JLAC10 code) -laboratory test value -laboratory test unit -date -inpatient/outpatient

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Conclusion