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

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dc.contributorPatient-Centered Outcomes Research Institute
dc.contributor.authorForrest, Christopher
dc.contributor.authorDenburg, Michelle
dc.contributor.otherChildren's Hospital of Philadelphia
dc.date.accessioned2024-07-09T19:50:29Z
dc.date.available2024-07-09T19:50:29Z
dc.descriptionThe 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.
dc.description.abstractStudy intended to inform shared decision-making regarding blood pressure management for pediatric chronic kidney disease (CKD).
dc.identifier.urihttps://pedsnet.org/metadata/handle/20.500.14642/726
dc.publisherPEDSnet
dc.relationOral Deflazacort, Drug Exposure
dc.relationKidney Dialysis
dc.relationOutpatient Visits
dc.relationHematology, Facility
dc.relationCardiology, Provider
dc.relationAnesthesia, Drug Exposure
dc.relationGestational Age, Measurement
dc.relationHeight, Measurement
dc.relationKidney Transplant
dc.relationNephrotoxic Chemotherapy, Drug Exposure
dc.relationPrimary Care, Provider
dc.relationOncology, Provider
dc.relationWeight, Measurement
dc.relationOncology, Facility
dc.relationNephrology, Facility
dc.relationCalcium Channel Blocker, Drug Exposure
dc.relationDiastolic Blood Pressure, Measurement
dc.relationUrology, Provider
dc.relationBody Mass Index Calculated by Source, Measurement
dc.relationSystolic Blood Pressure, Measurement
dc.relationAntineoplastic, Drug Exposure
dc.relationNephrology, Provider
dc.relationChemotherapy, Drug Exposure
dc.relationPrimary Care, Facility
dc.relationHematology, Provider
dc.relationBirth Weight, Measurement
dc.relationOral Fludrocortisone, Drug Exposure
dc.relationInpatient Visits
dc.relationUrology, Facility
dc.relationChronic Kidney Disease, Stages 2 and 3
dc.relationACE Inhibitor, Drug Exposure
dc.relationAngiotensin Receptor Blocker, Drug Exposure
dc.relationBeta Blocker, Drug Exposure
dc.relationLoop Diuretic, Drug Exposure
dc.relationBlood Pressure, Measurement
dc.relationSerum Bicarbonate, Measurement
dc.relationSerum Creatinine, Measurement
dc.relationSerum Cystatin, Measurement
dc.relationSerum Potassium, Measurement
dc.relationStomatitis
dc.relationThiazide, Drug Exposure
dc.relationUrinary Tract Infection
dc.relationUrine Creatinine, Measurement
dc.relationUrine Protein to Creatinine, Measurement
dc.relationUrine Protein, Qualitative Measurement
dc.relationUrine Protein, Quantitative Measurement
dc.relationDizziness
dc.relationElevated Blood Pressure, Distinct from Hypertension
dc.relationRenal Artery Stenosis
dc.relationPolycystic Kidney Disease (PKD)
dc.relationCongenital Anomalies of the Kidneys and Urinary Tracts (CAKUT)
dc.relationGastrointestinal Symptoms
dc.relationHypertension, Excluding Pregnancy-Related Hypertension
dc.relationKidney Transplant
dc.relationGlomerular Disease
dc.relationGlomerular Disease
dc.relationTonsillitis
dc.relationAmbulatory Blood Pressure Monitoring
dc.relationHypotension
dc.relationChronic Kidney Dialysis
dc.relationEdema
dc.relationKidney Biopsy
dc.relationEmergency Visits
dc.relationHeadache for PRESERVE
dc.relationPericarditis
dc.relationHypertension
dc.relationCough
dc.relationHair Loss
dc.relationCancer
dc.relationNocturnal Enuresis
dc.relationRespiratory Infections
dc.relationPyelonephritis
dc.relationCardiology, Facility
dc.relationPregnancy
dc.relationKidney Transplant
dc.relationChronic Dialysis
dc.relation.isreferencedbyMitsnefes, Mark M. et al. 2023. "Derivation of paediatric blood pressure percentiles from electronic health records." __eBioMedicine__ , Volume 98, 104885. <br>DOI: [10.1016/j.ebiom.2023.104885](doi.org/10.1016/j.ebiom.2023.104885)
dc.relation.isreferencedbyDenburg, 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. <br>DOI: [10.1016/j.xkme.2023.100722](doi.org/10.1016/j.xkme.2023.100722)
dc.relation.isreferencedbyRazzaghi 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. <br>DOI: [10.1371/journal.pdig.0000527](doi.org/10.1371/journal.pdig.0000527)
dc.relation.urihttps://github.com/PRESERVE-Coordinating-Center
dc.rightsa CC-BY 4.0 Attribution license.
dc.rights.urihttps://creativecommons.org/licenses/by-sa/4.0/
dc.subjectStudy::Funded Study::PEDSnet Study
dc.subjectStudy::Investigator-Led Study
dc.subjectStudy::Funded Study::PCORnet Study
dc.subject.meshRenal Insufficiency, Chronic
dc.subject.meshRenal Insufficiency
dc.subject.meshKidney Diseases
dc.subject.meshChronic Disease
dc.titlePreserving Kidney Function in Children with Chronic Kidney Disease (PRESERVE)
dspace.entity.typeStudy
local.subject.flatPEDSnet Data Source
local.subject.flatInvestigator-Led Study
local.subject.flatGPC Data Source
local.subject.flatPaTH Data Source
local.subject.flatSTAR Data Source
local.subject.flatRetrospective Study
local.subject.flatCohort Study
local.subject.flatObservational Study
local.subject.flatClinical Study
local.subject.flatPCORI Funded Research
project.endDate2024-06
project.startDate2021-07
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PCORnet® Designated Studies
Computable Phenotype Development
PRESERVE: Preserving Kidney Function in Children with Chronic Kidney Disease