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Recent Submissions

  • PEDSnet Data Analytics: argos Demonstration
    Created:2026-08-14
    This demonstration is an overview of how to use argos, the R package version of the PEDSnet standard framework, to connect to the Trino database backend and conduct analytics in R. This presentation was given at the PEDSnet Data Analytics meeting in August 2026.
  • Pediatric Skin Disease Frequencies and Dermatology Use by Race and Ethnicity in US Children's Hospitals
    Published:2026-06-01Journal:JAMA Dermatology
    Importance: Understanding which children present with skin disease and reach specialty care is essential for characterizing patterns of disease frequency and care use. Objective: To describe the frequencies of common pediatric skin diseases and patterns of dermatology use, stratified by race and ethnicity, across 8 US children's hospitals participating in the PEDSnet system. Design, setting, and participants: This was a multicenter cross-sectional study of 8 US children's hospitals in PEDSnet from January 2009 to July 2022. Data were analyzed from January 3 to March 26, 2024. The study cohort included children with 1 or more dermatology clinic visit or 2 or more non-dermatology clinic visits coded for atopic dermatitis (AD), acne, infantile hemangioma, psoriasis, or hidradenitis suppurativa (HS). Main outcomes and measures: Disease frequency per 100 000 children and proportion of children using dermatology care for each condition, stratified by race and ethnicity. Results: Of 536 776 patients, the mean (SD) age was 6.4 (6.3) years, 51.5% were female, and 0.2% were American Indian or Alaska Native, 6.4% Asian, 27.9% Black, 14.1% Hispanic, 0.3% Native Hawaiian or Other Pacific Islander, 8.4% non-Hispanic, 44.3% White, 4.3% multiple races, 5.5% unknown ethnicity, and 16.6% unknown race. Case counts were 377 970 for AD, 139 632 for acne, 54 305 for infantile hemangioma, 11 339 for psoriasis, and 5722 for HS. Electronic health record-derived frequencies varied across race and ethnicity groups. There were 10 469 (95% CI, 10 414-10 524) cases of AD per 100 000 Black children compared with 3099 (95% CI, 3083-3114) per 100 000 White children. There were 290 (95% CI, 280-300) cases of infantile hemangioma per 100 000 Black children compared with 764 (95% CI, 756-772) per 100 000 White children. Black children had a low proportion of dermatology use across all 5 conditions, yet high frequencies of AD, acne, and HS. Conclusions and relevance: In this study, across all studied conditions, Black children had a low proportion of dermatology use at participating PEDSnet US children's hospitals, despite having high frequencies of AD, acne, and HS. Further research is required to determine whether these patterns represent appropriate specialty care use or reflect gaps in care.
  • Patient Voices Leading Change: A Call to Action for Careful, Kind, and Connected Patient-Partnered Research in PCORnet®
    Published:2026-02-01Journal:Medical Care
    As the 8 patient partners serving on the PCORnet® Steering Committee, we stand at the forefront of a transformative movement in clinical research. PCORnet® Network Partners have been pioneers in integrating patient voices into every aspect of the research process, and we applaud the progress in operationalizing the Patient-Centered Outcomes Research Institute's (PCORI) Framework for Patient Engagement and for leading the way as funders to change how to effectively involve patients and other interested parties in research. However, we believe that now is the time to amplify our efforts and call for a fundamental shift in how health research is conducted across the board. This commentary serves as both a reflection on our journey and a rallying cry for deeper, more authentic patient engagement and partnership in clinical research. The landscape of clinical research has undergone significant changes over the past decade, with patient engagement emerging as a cornerstone of patient-centered outcomes research. This shift is evidenced by major funding agencies now requiring patient engagement and a growing body of literature demonstrating improved study quality, recruitment, and relevance when patients are engaged as partners. As patient partners participating in PCORnet®, we have been at the forefront of this evolution, witnessing firsthand the progress made and the challenges and learnings that remain. Drawing on our experiences and evidence from the literature, we propose strategies to enhance patient involvement across all stages of research. We introduce and explore the concept that clinical research should be "careful, kind, and connected." Our reflections underscore that meaningful patient involvement is essential for advancing health outcomes and achieving a truly patient-partnered research ecosystem.
  • Incidence of Autoimmune Diseases in Children with Atopy Treated with Dupilumab
    Published:2026-08Journal:Journal of Allergy and Clinical Immunology
    Background: The type 2 inflammation-blocking agent dupilumab has gained traction as an effective treatment of multiple atopic diseases. New-onset autoimmune manifestations have been infrequently reported in dupilumab-treated atopic patients, primarily among adults. Autoimmune outcomes in atopic children on dupilumab are less clear. Objective: We aimed to determine if dupilumab treatment of atopic children is associated with increased autoimmune or autoinflammatory disease diagnosis risk. Methods: Using a multi-institutional electronic health record database composed of 10 PEDSnet academic health systems, we performed a retrospective cohort study of children aged 6-17 with atopy (ie, moderate-to-severe atopic dermatitis and/or persistent asthma, as defined by diagnosis codes and prescriptions) with or without (n = 4,189 and n = 4,195 in inverse-probability-of-treatment-weighted cohorts, respectively) dupilumab prescription between October 1, 2018, and November 29, 2023. Poisson regression estimated autoimmune disease incidence rates and rate differences, and Cox proportional hazards models estimated relative associations between dupilumab exposure and disease diagnosis. Results: Among atopic children, the adjusted incidence rate difference (dupilumab-treated minus untreated) for any autoimmune disease was 2.47 (95% confidence interval, 0.82, 4.30) per 1,000 person-years, driven primarily by cutaneous autoimmune diseases (rate difference, 2.20 [95% confidence interval 0.77, 3.70] per 1,000 person-years). The rates of any or cutaneous autoimmune disease within 4 years of dupilumab treatment were 1.45-fold and 1.57-fold higher, respectively, in treated compared with untreated atopic children. Conclusion: We detected a modest association between dupilumab and cutaneous autoimmune disease diagnosis in atopic children. These findings help address knowledge gaps about clinical outcomes in atopic children treated with this biologic.
  • Graves' Disease, Diagnosed
    Refreshed:2026-07
    This concept set is intended to identify patients with a diagnosis of Graves' Disease.