Preserving Kidney Function in Children with Chronic Kidney Disease (PRESERVE), United States, 2009-2024

The Preserving Kidney Function in Children With Chronic Kidney Disease (PRESERVE) study was designed to provide new knowledge to inform shared decision-making regarding blood pressure (BP) management for pediatric chronic kidney disease (CKD). PRESERVE compared the effectiveness of alternative strategies for monitoring and treating hypertension on preserving kidney function; expanded the National Patient-Centered Clinical Research Network (PCORnet) Common Data Model by adding pediatric- and kidney-specific variables and linking electronic health record data to other kidney disease databases; and assessed the lived experiences of patients related to BP management.
Participants were recruited from 15 clinical institutions across the United States. The research team analyzed electronic health record (EHR) data from 11,851 children with CKD and their caregivers to compare different ways to monitor and treat BP to preserve kidney function. In addition, a subset of patients and caregivers completed an online survey detailing patient-reported outcomes, such as fatigue, life satisfaction, pain levels, sleep disturbance, anxiety, and peer relationships (n=395).
Due to the risk of re-identification based on unique patterns in the individual-level PCORnet electronic health record (EHR) data, patient privacy regulations prohibit the public release of the individual-level data. This collection contains the code underlying the analysis; instructions, codesets, and output lists for the PCORnet queries; and the survey questionnaires for patients and family members.