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. 2023 Sep 14;5(11):100722. doi: 10.1016/j.xkme.2023.100722
Aim 1: Enhance the PCORnet CDM for pediatric and rare kidney disease research.
Objectives
  • 1.1

    To expand and improve the PCORnet CDM with new pediatric- and kidney-specific variables.

  • 1.2

    To perform study-specific data quality assessment and conduct necessary remediation for data quality optimization in response to data quality assessment.

  • 1.3

    To perform linkage of EHR data with the CKiD cohort study and USRDS.

  • 1.4

    To create an integrated data platform that comprises EHR, ABPM data, and linked data from the CKiD and USRDS for the study cohort as well as reusable tools that are publicly distributed.

Aim 2: Describe and examine the effectiveness of consistent BP and urine protein monitoring for preserving kidney function.
Objectives
  • 2.1

    To generate systolic and diastolic blood pressure z scores in the general pediatric population and contrast them with the normative BP distribution data reported in the 2017 American Academy of Pediatrics Blood Pressure Clinical Practice Guideline.

  • 2.2

    To create and evaluate alternative EHR-based operational definitions for measured hypertension based on BP z scores and the clinical definitions of hypertension in the 2017 BP Clinical Practice Guideline.

  • 2.3

    To describe current BP and urine protein monitoring practices for children with mild-moderate CKD and to evaluate the effects of monitoring consistency on kidney function decline independent of established clinical risk factors for CKD progression.

  • 2.4

    To evaluate heterogeneity of treatment effects for BP and urine protein monitoring.

Aim 3: Compare the effectiveness of BP medication strategies for preserving kidney function.
Objectives
  • 3.1

    To evaluate the association of levels of BP and urine protein when treatment was initiated (ie, first prescribed) and kidney function decline.

  • 3.2

    To assess the impact of ongoing BP control and absence of urine protein on kidney function decline.

  • 3.3

    To examine the associations of antihypertensive treatment strategies with kidney function decline, overall and by CKD etiology and degree of proteinuria.

  • 3.4

    To describe and evaluate heterogeneity of treatment effect for BP and urine protein management by sociodemographic and clinical characteristics.

Aim 4: Assess patients’ lived experiences related to BP management.
Objectives
  • 4.1

    To coproduce a patient-parent survey with leadership provided by parent partners.

  • 4.2

    To field a survey that examines patient-centered outcomes by level of BP control and medication management approaches.

  • 4.3

    To assess adverse events related to hypertension management using data from the patient survey and EHR.

Abbreviations: ABPM, ambulatory blood pressure monitoring; BP, blood pressure; CDM, common data model; CKD, chronic kidney disease; CKiD, Chronic Kidney Disease in Children; eGFR, estimated glomerular filtration rate; EHR, electronic health record; USRDS, United States Renal Data System.