The Preserving Kidney Function in Children With CKD (PRESERVE) Study: Rationale, Design, and Methods

Area of Science:

• Pediatric Nephrology
• Cardiovascular Health in Chronic Disease
• Health Services Research

Background:

• Hypertension significantly contributes to kidney function loss in pediatric chronic kidney disease (CKD).
• Effective blood pressure (BP) management is crucial for preserving kidney function in children with CKD.
• Existing knowledge gaps hinder optimal BP management strategies for this population.

Purpose of the Study:

• To generate new knowledge informing shared decision-making for BP management in pediatric CKD.
• To compare the effectiveness of different hypertension monitoring and treatment strategies on kidney function preservation.
• To assess patient and caregiver experiences related to BP management in pediatric CKD.

Main Methods:

• Multicenter retrospective cohort and cross-sectional studies involving over 20,000 children with mild-moderate CKD.
• Utilized electronic health record data linked to other kidney disease databases via the National Patient-Centered Clinical Research Network (PCORnet).
• Analyzed BP measurements, urine protein, antihypertensive treatments, and patient-reported outcomes (PROs).

Main Results:

• The study design allows for the comparison of BP management strategies and their impact on kidney function.
• Expansion of the PCORnet common data model with pediatric CKD-specific variables enhances research infrastructure.
• Incorporation of patient-reported outcomes provides a comprehensive understanding of treatment effectiveness.

Conclusions:

• PRESERVE leverages PCORnet to address critical knowledge gaps in pediatric CKD BP management.
• The findings will support evidence-based shared decision-making for optimizing kidney function preservation.
• Focus on patient-centered outcomes ensures clinical relevance and improves the quality of life for children with CKD.