PEDSpace


Welcome to PEDSpace, a public data bank repository powered by PEDSnet. PEDSpace serves as a centralized hub where digital assets generated during PEDSnet studies are made readily accessible to researchers, clinicians, and stakeholders worldwide.

In PEDSpace, users can explore a wealth of resources to facilitate impactful research endeavors. Among these assets are meticulously defined variables, curated code sets, and modules for assessing data quality. Each component is designed to empower researchers with the tools necessary to navigate complex pediatric healthcare data effectively.

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    Strategies for the Development of Sodium-Glucose Cotransporter-2 Inhibitors for Kidney Protection in Pediatric Chronic Kidney Disease: Proceedings of a Workshop Meeting in July 2023
    Created:2026-01Affiliation:Nationwide Children's Hospital; University of North Carolina at Chapel Hill; University of Liverpool; University of Iowa; University of Washington School of Medicine; University Medical Center Groningen; Perelman School of Medicine at the University of Pennsylvania; University Medical Center Goettingen; Boehringer Ingelheim Pharmaceuticals; Kidney Health Initiative; NephCure; U.S. Food and Drug Administration; University of Michigan
    Pediatric patients with chronic kidney disease (CKD) are treated with nonspecific therapies such as renin-angiotensin-aldosterone system inhibitors; however, there are no approved therapies to slow the progression of pediatric CKD across its diverse etiologies. Sodium-glucose cotransporter-2 inhibitors (SGLT2is) have demonstrated efficacy in slowing the rate of decline in estimated glomerular filtration rate and CKD progression in adults. These therapies hold the promise of similar clinical benefit for pediatric patients with CKD by potentially delaying progression to kidney failure. However, clinical data informing the efficacy, safety, and dosing of these products in pediatric patients with CKD are lacking. To address this issue, a 1.5-day workshop was convened by the Kidney Health Initiative and NephCure, with participation from stakeholders that included regulators, National Institutes of Health representatives, trialists, clinicians and investigators, industry representatives, patient advocates, and caregivers. The goal of the workshop was to elucidate the challenges and strategize approaches to evaluate the use of SGLT2is in pediatric patients with CKD. To this end, presentations and discussions at the workshop focused on the data supporting the degree to which the course of CKD and expected treatment responses between adult and pediatric populations with CKD are similar, and hence, the degree to which, if any, data from the trials of SGLT2is in adults could be extrapolated to pediatric patients with CKD. Discussions also focused on trial design feasibility, end points, gaps in knowledge, and safety considerations for SGLT2is in pediatric CKD. The workshop proposed pathways to advance the evaluation of SGLT2is as therapeutic agents to treat glomerular and nonglomerular pediatric CKD while identifying remaining challenges and research priorities.
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    Growth in Children with a Cleft Lip and/or Palate in 8 US Hospitals: A Retrospective Cohort Study
    Created:2026-03-31Affiliation:Seattle Children's Research Institute; Seattle Children's Hospital; Ohio State University; Nationwide Children's Hospital; Stanford University; Children's Hospital of Philadelphia; Children's Hospital Colorado; Ann & Robert H. Lurie Children's Hospital of Chicag; Cincinnati Children's Hospital Medical Center
    Objectives: To evaluate growth patterns in US children with cleft overall and by cleft lip (CL), CL and palate (CLP), and cleft palate (CP) across US children's hospitals from 0 to 18 mo of age. Design: We conducted a retrospective cohort study leveraging medical records from 2009 to 2022 in children with a cleft seen at 8 US children's hospitals. Participants: Individuals with a cleft seen at a PEDSnet consortium hospital. Exposure: We examined growth over time, by cleft type, and across hospitals. Main outcomes: We used electronic health data to generate weight-for-age z scores (WAZ) and length-for-age z scores (LAZ), as well as underweight (WAZ <-2) and stunting (LAZ <-2). We tracked longitudinal growth using generalized linear mixed models to estimate mean WAZ and LAZ from 0 to 18 mo of age. We compared the prevalence of underweight and stunting against World Health Organization growth standards. Results: Our sample included 10,223 children: 19.1% with CL, 31.7% with CLP, and 49.2% with CP. WAZ and LAZ trajectories showed a fast rate of decline in the first 4 mo of life (P < 0.001). Between 6 and 12 mo and between 12 and 18 mo, WAZ showed a significant nonlinear increase in growth (P < 0.01) while LAZ remained unchanged (P > 0.05). All children had a higher prevalence of underweight and stunting relative to World Health Organization growth standards. Underweight and stunting were highest among those with CP, followed by CLP and then CL, and varied across hospitals. Conclusions: Growth trajectories were slower in the first 4 mo of life, followed by rapid catch-up in weight to 12 mo of age. Children with cleft had a high prevalence of underweight and stunting at all ages. Variability across hospitals suggests that care patterns may affect growth. Close growth monitoring in the first 4 mo in children with cleft may be warranted.Knowledge Transfer Statement:US children with a cleft of the lip and/or palate have substantial growth deficits that vary by cleft type, comorbidities, and across hospitals, particularly in the first 4 mo of life.
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    Target Trial Emulation of Vaccine Effectiveness in 5- to 17-years-olds with Prior SARS-CoV-2 Infection
    Created:2026-04-17Affiliation:University of Pennsylvania; Perelman School of Medicine at the University of Pennsylvania; University of Pittsburgh; University Medical Center New Orleans; NYU Grossman School of Medicine; University of Iowa; Seattle Children's Research Institut; UT Southwestern Medical Center; University of Utah; Ohio State University; Ochsner Health; Nicklaus Children's Hospital; Lewis Katz School of Medicine at Temple University; University of Florida; Benioff Children's Hospital; Albert Einstein College of Medicine; University of Alabama; Nationwide Children's Hospita; Penn State Health Milton S. Hershey Medical Center; University of Nebraska; Stanford School of Medicine; Columbia University; Medical College of Wisconsin; University of Michigan; Ann & Robert H. Lurie Children's Hospital of Chicago; Children's Hospital of Philadelphia
    The effectiveness of COVID-19 vaccination in children and adolescents with prior SARS-CoV-2 infection remains unclear, particularly for Omicron subvariants. We evaluate vaccine effectiveness against reinfection with Omicron BA.1/BA.2, BA.4/BA.5, XBB, and later subvariants among 5- to 17-year-olds using data from the RECOVER initiative, a national electronic health record database covering 37 U.S. children's hospitals and health institutions. We emulate target trials by age group and variant period, comparing previously infected participants between January 2022 and August 2023. During the BA.1/BA.2 period, vaccination reduces the risk of reinfection, with effectiveness rates of 62% in children and 65% in adolescents. During the BA.4/BA.5 period, protection effectiveness in children was 57%, whereas no statistically significant protection is observed in adolescents. During the XBB and later period, no significant protection is observed in either group. In summary, COVID-19 vaccination provides protection against reinfection during the early and mid-Omicron periods in previously infected pediatric populations, but effectiveness declines for later variants.
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    Blood Pressure Control in Adolescents With CKD and Risk of Kidney Failure in Young Adulthood
    Created:2026-05-05Affiliation:University of North Carolina at Chapel Hill; Children's Hospital of Philadelphia; Medical College of Wisconsin; University of Colorado School of Medicine; Nemours Children's Health; Johns Hopkins University; University of Iowa Stead Family Children's Hospita; Nationwide Children's Hospital; University of Miami Miller School of Medicine; Stanford University School of Medicine; Ann & Robert H. Lurie Children's Hospital of Chicago; Cincinnati Children's Hospital Medical Center; Seattle Children's Hospital; University of Michigan; University of Florida; Perelman School of Medicine at the University of Pennsylvania
    Rationale & objective: Understanding risk factors for chronic kidney disease (CKD) progression during adolescence is essential to improve outcomes for these individuals as adults. The objective of the present study was to retrospectively analyze electronic health records of children with CKD to understand the effect of cumulative systolic blood pressure (SBP) load during adolescence on time to kidney replacement therapy (KRT) or death during young adulthood. Study design: Retrospective cohort study. Setting & participants: Adolescents with CKD were enrolled from 14 academic medical centers in the Preserving Kidney Function in Children with Chronic Kidney Disease (PRESERVE) study. Individuals aged between 1 and less than 18 years with 2 or more estimated glomerular filtration rate measurements between 30 and <90 mL/min/1.73 m2 separated by ≥90 days without an intervening estimated glomerular filtration rate ≥90 mL/min/1.73 m2 were included. Exposure: Cumulative SBP load was defined using area under and above the SBP curve (ie, time and magnitude) and time-only approaches using the 50th, 75th, and 90th SBP percentiles. Outcomes: Time to KRT (long-term dialysis initiation or kidney transplantation) or death were ascertained via linkage with the US Renal Data System. Analytical approach: Cox proportional hazards models were used to investigate the relationship between blood pressure (BP) control and the composite of KRT or death. Results: The cohort included 2,585 individuals with a median follow-up of 7.45 years (IQR, 6.05-9.20), among whom 4.6% (n = 118) met the KRT or death outcome between ages 18 and 30 years. In an adjusted Cox model, each unit increase (percentile point × time) in cumulative SBP load >90th percentile was associated with 1.36 (95% CI, 1.17-1.58) times higher hazard of KRT or death at age 18-19 years. Control of SBP to <90th percentile for 25%, 50%, and 100% of time between ages 14 and 18 years was associated with a 47%, 72%, and 92% risk reduction of KRT or death at age 18-19 years compared with no SBP control. Limitations: Misclassification of BP control related to white coat or masked hypertension. Adherence to prescribed antihypertensive medications was not assessed. Conclusions: Worse SBP control during adolescence was associated with a markedly increased risk of kidney failure in young adulthood. Cumulative SBP load derived from electronic health record data can inform risk of adverse long-term kidney outcomes.
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    SSRI/SNRI and Long COVID in Children and Adolescents with Neuropsychiatric Conditions: a Cohort Study from the RECOVER Initiative
    Created:2026-06-29Affiliation:University of Pennsylvania; Weill Cornell Medicine; Nemours Children’s Health; Children’s Hospital of Philadelphia; University of Pittsburgh; University of Nebraska Medical Center; OCHIN; University Medical Center New Orleans; University of Iowa; Seattle Children’s Research Institute; UT Southwestern Medical Center; University of Utah; Ohio State University; Ochsner Health, New Orleans; Nicklaus Children’s Hospital; Temple University
    Long COVID has been an important health concern in children and adolescents, yet factors associated with its development remain incompletely understood. Selective serotonin reuptake inhibitors (SSRIs) and serotonin–norepinephrine reuptake inhibitors (SNRIs) are widely prescribed for pediatric neuropsychiatric conditions and may influence immune and autonomic pathways involved in postinfectious symptoms. Here we show associations between SSRI/SNRI use and long coronavirus disease (COVID)-related outcomes in a retrospective cohort of 110,955 children and adolescents with pre-existing neuropsychiatric conditions across 37 US health systems participating in the National Institutes of Health Researching COVID to Enhance Recovery consortium. SSRI/SNRI use was not associated with clinician-recorded long COVID diagnosis but showed heterogeneous associations with individual symptoms. Lower risks were observed for some symptoms, including fever, chills and hair loss, whereas higher risks were observed for neurological and systemic outcomes, including postural orthostatic tachycardia syndrome, cognitive dysfunction and fatigue. These findings suggest that antidepressant exposure may be associated with differing post-COVID symptom patterns in youth and warrant further investigation.