Preserving Kidney Function in Children with Chronic Kidney Disease (PRESERVE)

Study Dates

2021-07 - 2024-06

Last Modified

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Publisher

PEDSnet

Abstract

Study intended to inform shared decision-making regarding blood pressure management for pediatric chronic kidney disease (CKD).

Funder(s)

This research was made possible through the generous support of the Patient-Centered Outcomes Research Institute .

Provenance

Description

The purpose of PRESERVE is to provide new knowledge to inform shared decision-making regarding blood pressure management for pediatric chronic kidney disease (CKD). Hypertension occurs in 50% of children with CKD and is a major risk factor for decline in kidney function. Several clinical practice guidelines have offered recommendations for blood pressure management in pediatric CKD; however, clinical trial and large-scale observational data are limited, leading to a weak evidence base and substantial practice variation. Specific aims of the study include enhancing the PCORnet Common Data Model for pediatric and rare kidney disease research; describing and examining the effectiveness of consistent blood pressure and urine protein monitoring for preserving kidney function; comparing the effectiveness of BP medication strategies for preserving kidney function; and assess patients’ lived experiences related to blood pressure management.

Vocabulary

Related Concept Set

Deflazacort, Oral
(2022-02-01) Children's Hospital of Philadelphia
Concept set intended to identify patients with an exposure to oral Deflazacort.
Kidney Dialysis
(2021-11-01) Children's Hospital of Philadelphia
This concept set is intended to identify patients with a diagnosis code relating to kidney dialysis.
Outpatient Visits
(2021-09-01) Children's Hospital of Philadelphia
Hematology, Facility
(2023-08-01) Children's Hospital of Philadelphia
Concept set intended to assess the frequency with which patients sought care with specialties involved in patient care for and related to hematology.
Cardiology, Provider
(2021-10-01) Children's Hospital of Philadelphia
Concept set intended to assess the frequency with which patients sought care with specialties involved in patient care for and related to cardiology.

Related Person

Related Person

Related Person

Related Phenotype

Mild-to-Moderate Pediatric Chronic Kidney Disease, Stages 3 to 5
(2024-09) Children's Hospital of Philadelphia; Hospital of the University of Pennsylvania
Phenotype for identifying a cohort of patients with mild-to-moderate chronic kidney disease for several analyses investigating the effects of factors such as etiology or blood pressure control on kidney function outcomes.
Kidney Transplant
(2025-03) Children's Hospital of Philadelphia; PEDSnet Data Coordinating Center
A phenotype to identify patients with chronic kidney dialysis based on a combination of broad and chronic dialysis procedure and condition codes, and eGFR values. Downloadable content for this Phenotype includes two R files (cohorts.R and driver.R) and a specs folder, which includes the required concept sets.
Chronic Dialysis
(2025-03) Children's Hospital of Philadelphia; PEDSnet Data Coordinating Center
A phenotype to identify patients with kidney transplant based on a combination of kidney transplant and kidney biopsy procedure and condition codes, and eGFR values.
End-Stage Kidney Disease (ESKD)
(2025-03) Children's Hospital of Philadelphia; PEDSnet Data Coordinating Center
A phenotype to identify patients with end-stage kidney disease (ESKD), defined as having either chronic dialysis or kidney transplant based on a combination of kidney transplant, kidney biopsy, and kidney dialysis procedure and condition codes, and eGFR values.
Estimated Glomerular Filtration Rate (eGFR)
(2024-01) Children's Hospital of Philadelphia; PEDSnet Data Coordinating Center
A function to derive the estimated glomerular filtration rate (eGFR) for a cohort of patients with existing serum creatinine and height measurements. eGFR values can be used to evaluate the presence and severity of chronic kidney disease (CKD) and other kidney related conditions. Downloadable content for this Phenotype includes two R files (cohorts.R and driver.R) and a specs folder, which includes the related concept sets linked below.

Related Study

Rationale, Design and Methods of the Preserving Kidney Function in Children with Chronic Kidney Disease (PRESERVE) Study
Children's Hospital of Philadelphia
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.
Derivation of Pediatric Blood Pressure References from Electronic Health Records
Cincinnati Children's Hospital Medical Center; Children's Hospital of Philadelphia
Study to examine the feasibility of using “real-world” office BP data obtained from electronic health records (EHR) to generate age-, sex- and height-specific BP percentiles for children.

Related Publications

Mitsnefes, Mark M. et al. 2023. “Derivation of paediatric blood pressure percentiles from electronic health records.” eBioMedicine , Volume 98, 104885.
DOI: 10.1016/j.ebiom.2023.104885


Denburg, Michelle R. et al. 2023. “The Preserving Kidney Function in Children With CKD (PRESERVE) Study: Rationale, Design, and Methods”. Kidney Medicine , Volume 5, Issue 11, 100722.
DOI: 10.1016/j.xkme.2023.100722


Razzaghi H., Goodwin Davies A., Boss S., Bunnell H.T., Chen Y., et al. 2024. “Systematic data quality assessment of electronic health record data to evaluate study-specific fitness: Report from the PRESERVE research study.” PLOS Digital Health 3(6): e0000527.
DOI: 10.1371/journal.pdig.0000527

Creative Commons license

Except where otherwised noted, this item's license is described as a CC-BY 4.0 Attribution license.