Related Experiment Video
Updated: Jun 7, 2026

TBase - an Integrated Electronic Health Record and Research Database for Kidney Transplant Recipients
Published on: April 13, 2021
Development and validation of an electronic health record-based chronic kidney disease registry
Sankar D Navaneethan1, Stacey E Jolly, Jesse D Schold
1Department of Nephrology and Hypertension, Glickman Urological and Kidney Institute, 9500 Euclid Avenue, Q7, Cleveland Clinic, Cleveland, OH 44195, USA. navanes@ccf.org
Insights
Developing an electronic health record (EHR)-based chronic kidney disease (CKD) registry is feasible and reliable for research. This CKD registry can improve patient care and support national surveillance efforts.
Area of Science:
- Nephrology
- Health Informatics
- Public Health Surveillance
Background:
- Chronic kidney disease (CKD) prevalence is rising globally.
- There is a need for robust data from diverse healthcare settings to inform interventions.
- Electronic Health Records (EHRs) offer a potential platform for large-scale CKD data collection.
Purpose of the Study:
- To develop and validate an EHR-based CKD registry at a large academic medical center.
- To assess the feasibility and reliability of using EHR data for CKD research.
- To evaluate the accuracy of comorbid condition data within the registry.
Main Methods:
- A retrospective cohort was identified using EHR data from Cleveland Clinic.
- Inclusion criteria included specific estimated glomerular filtration rate (eGFR) thresholds or ICD-9 codes for kidney disease.
- Data from administrative datasets were compared to manual EHR chart reviews to validate comorbid conditions using kappa statistics.
Main Results:
- The registry included 57,276 patients as of March 2010.
- Substantial agreement (>0.80) was found for most comorbid conditions between administrative data and EHR review.
- Moderate agreement (<0.60) was observed for coronary artery disease and hypertension.
Conclusions:
- An EHR-based CKD registry is a feasible and reliable tool for a large health system.
- The registry can support CKD research and quality improvement initiatives.
- This approach can complement national efforts for CKD surveillance.
Background And Objectives:
Chronic kidney disease (CKD) is increasing, and outcomes-related research from diverse health care settings is needed to target appropriate efforts and interventions. We developed an electronic health record (EHR)-based CKD registry at the Cleveland Clinic and validated comorbid conditions.
Design, Setting, Participants, & Measurements:
Patients who had at least one face-to-face outpatient encounter with a Cleveland Clinic health care provider and (1) had two estimated GFR values <60 ml/min per 1.73 m(2) >90 days apart as of January 1, 2005 and/or (2) were patients with International Classification of Diseases-9 (ICD-9) diagnosis codes for kidney disease were included.
Results:
Our registry includes 57,276 patients (53,399 patients met estimated GFR criteria and 3877 patients met ICD-9 diagnosis code criteria) as of March 2010. Mean age was 69.5 ± 13.4 years, with 55% women and 12% African Americans. Medicare is the primary insurer for more than one half of the study cohort. The κ statistics to assess the extent of agreement between the administrative dataset extracted from the EHR and actual EHR chart review showed substantial agreement (>0.80) for all conditions except for coronary artery disease and hypertension, which had moderate agreement (<0.60).
Conclusions:
Development of an EHR-based CKD registry is feasible in a large health system, and the comorbid conditions included in the registry are reliable. In addition to conducting research studies, such a registry could help to improve the quality of care delivered to CKD patients and complement the ongoing nationwide efforts to develop a CKD surveillance project.
Related Concept Videos
Chronic Kidney Disease III: Interprofessional Care
Chronic Kidney Disease I: Introduction
Chronic Kidney Disease II: Clinical Manifestations
Chronic Kidney Disease IV: Nursing Management
Drug Dosing in Renal Diseases: Estimation of Glomerular Filtration Rate Based on Serum Creatinine Concentration
Acute Kidney Injury IV: Diagnostic Studies and Prevention

