Rationale, Design and Methods of the Preserving Kidney Function in Children with Chronic Kidney Disease (PRESERVE) Study
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Abstract
Study to provide new knowledge to inform shared decision-making regarding blood pressure (BP) management for pediatric chronic kidney disease (CKD). PRESERVE will compare the effectiveness of alternative strategies for monitoring and treating hypertension on preserving kidney function; expand 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 assess the lived experiences of patients related to BP management.
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Hypertension is a major modifiable contributor to loss of kidney function in chronic kidney disease (CKD). The purpose of PRESERVE is to provide evidence to inform shared decision-making regarding blood pressure management for children with CKD. PRESERVE is a consortium of 16 health care institutions in PCORnet, the National Patient-Centered Clinical Research Network, and includes electronic health record data for >19,000 children with CKD. PRESERVE will (1) expand the PCORnet infrastructure for research in pediatric CKD by adding kidney-specific variables and linking electronic health record data to other kidney disease databases; (2) compare the effectiveness of alternative strategies for monitoring and treating hypertension on preserving kidney function; and (3) assess the lived experiences of patients and caregivers related to blood pressure management.
Study Design
Multicenter retrospective cohort study (clinical outcomes) and cross-sectional study (patient-reported outcomes [PROs]).
Cohort Description
PRESERVE included approximately 20,000 children between January 2009-December 2022 with mild-moderate CKD from 15 health care institutions that participate in 6 PCORnet Clinical Research Networks (PEDSnet, STAR, GPC, PaTH, CAPRiCORN, and OneFlorida+).
Inclusion Criteria:
- ≥ 1 nephrologist visit
- ≥ 2 estimated glomerular filtration rate (eGFR) values in the range of 30 to < 90 mL/min/1.73 m2 separated by ≥ 90 days without an intervening value ≥ 90 mL/min/1.73 m2 and no prior dialysis or kidney transplant.
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Related Publications
Denburg MR, Razzaghi H, Goodwin Davies AJ, Dharnidharka V, et al. September 2023. “The Preserving Kidney Function in Children With CKD (PRESERVE) Study: Rationale, Design, and Methods.” Kidney Medicine. ;5(11):100722.
DOI: 10.1016/j.xkme.2023.100722
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