Clinical Outcomes by Language of Care in Pediatric Oncology
Although language disparities in outcomes are well documented in general pediatrics and adult oncology, little is known in pediatric oncology. Patient or family language is not included in many multi- institutional databases and patient registries, limiting studies of language-based inequities…
Extreme weather impacts on children’s acute and chronic health outcomes; a multisite study with evaluation of vulnerabilities
The “Extreme Weather and Pediatric Health Outcomes” study investigates the impact of climate change-related extreme weather events, such as extreme heat and heavy rainfall, on children’s health across the United States. This innovative research aims to address critical knowledge gaps…
Characterization of Babies Born with Hemolytic Disease of the Fetus/Newborn (HDFN)
Hemolytic disease of the fetus and newborn (HDFN) otherwise known as erythroblastosis fetalis, is a disease in which fetal and neonatal erythrocytes are destroyed by maternal IgG alloantibodies. Before the first RhD immunoprophylaxis was introduced as a treatment in 1968,…
PCORnet Bariatric Study (PBS)
The use of bariatric surgery as a treatment for severe obesity has increased dramatically over the past two decades, but there have been few high-quality, long-term studies comparing the outcomes of different procedures. Prior studies have also not been large…
Development and Validation of an Equitable Computable Phenotype for Classifying Pediatric Sleep Deficiency in Electronic Health Records
Sleep deficiency remains one of the most prominent and unaddressed public health concerns in pediatric healthcare settings. Pediatric sleep disparities are prominent across minoritized racial subpopulations in the dimensions of sleep duration, timing, alertness, behaviors, and quality/disorders. Despite the evidence…
Determine the rate of clotting in central venous catheters (CVCs)
The purpose of this study is to assess the feasibility of conducting a study of central venous catheter-associated thrombosis in children using PEDSnet data. Aim 1. Identify patients with evidence of CVC placement based on procedure or device data. –…
NEST R1: Developing Capacity for Post Marketing Surveillance of Craniomaxillofacial Distractors
The National Evaluation System for health Technology Coordinating Center (NESTcc) is tasked to be a catalyst for the timely, reliable, and cost-effective development of real-world evidence (RWE) to enhance regulatory and clinical decision-making for medical devices. Real world data (RWD)…
NEST R2: Characterization and Utilization of Therapeutic Cardiac Devices in Children with Congenital Heart Disease
Utilizing the Electronic Health Record (EHR) to capture the use of implantable devices during congenital cardiac catheterization procedures across multiple institutions has not been previously possible. In this Test Case sponsored by the National Evaluation System for Health Technology Coordinating…
Developing toolkit to control for missing data
Distributed health data networks (DHDNs) that leverage electronic health records (EHRs) (e.g., eMerge, pSCANNER, PEDSnet) have gained substantial interests in recent years, as they a) eliminate the need to create, maintain, and secure access to central data repositories, b) minimize…
Detection of and Characteristics of Disease Progression in Children with CKD
The purpose of this study was to inform the design of a possible clinical trial in children with chronic kidney disease. Our goals were to use the PEDSnet EHR database to: 1. Identify a population of children ages 6 months…
PEDSnet: Advancing Pediatric Patient-Centered Outcomes Research in PCORnet
PEDSnet’s guiding purpose is to improve child health through knowledge production that is efficient (produced faster at less cost) and meaningful (useful to patients, caregivers, clinicians, and health system leaders). Led by the Children’s Hospital of Philadelphia (CHOP), PEDSnet is…
Implementing Minoritized Community Engagement with Pediatric Dermatology
Dermatology care is nearly non-existent for American Indian and Alaska Native (AIAN) youth. The Indian Health Service (IHS) currently employs a single dermatologist for more than 2 million patients, which suggests that AIAN youth face substantial barriers to accessing dermatology….
Clinical Characteristics of Adolescents Hospitalized for Eating Disorders 2010-2020
This study will gather more data and characteristics of pediatric patients with eating disorders. The intention is to use PEDSnet data to gather demographic (age, sex, insurance status) as well as clinical (cardiac complications such as arrhythmias, bradycardia) from patients…
Health Services and Clinical Characteristics that Precede Diagnosis of Primary Hyperoxaluria Type 1
Primary hyperoxaluria (PH) encompasses 3 genetically distinct, autosomal-recessive, inborn errors of glyoxylate metabolism characterized by the over-production of oxalate, a highly insoluble metabolic endproduct that is eliminated mainly by the kidney. All 3 forms of PH exhibit some extent of…
Does Receiving Guidelines-Based Care Improve Health Outcomes for Adults with Congenital Heart Defects? — The CHI-RON Study
Congenital heart defects, or CHDs, are the most common type of birth defect. CHDs can be noncomplex or complex. Examples of noncomplex CHDs include an issue with one heart valve or a hole in the heart. Complex CHDs may affect…
Biologic Abatement and Capturing Kids’ Outcomes and Flare Frequency in Juvenile Spondyloarthritis (“BACK-OFF JSpA”)
Spondyloarthritis is a type of arthritis that affects the spine and joints. It affects one in three youth with arthritis. Spondyloarthritis can cause symptoms like joint pain, back pain, and eye problems. Doctors often treat this type of arthritis with…
Treatment of Henoch-Schonlein purpura (HSP) Nephritis
Henoch-Schonlein purpura (HSP) is one of the most common forms of vasculitis in children, with an incidence of around 6-24 cases per 100,000 per year and with 90% of cases presenting before age ten. While many cases are self-limited, 30-50%…
Evaluating the Occurrence of Adverse Events Among Pediatric Patients Exposed to IV Lacosamide Using RWD
Epilepsy affects the pediatric population with an estimated prevalence of 6.8 per 1,000 insured children. Newly introduced antiepileptic drugs (AEDs) may be used off-label in children with epilepsy before completion of pediatric regulatory studies, creating an opportunity to evaluate the…
COVID-19 Healthcare Worker Exposure Response & Outcomes (HERO) Trial
Importance: Healthcare workers are on the front-lines of the COVID-19 pandemic and may be disproportionately affected by it. Objective: To assess the effects of the pandemic on the health and lives of US healthcare workers. Design: Survey of US healthcare…
NEST R2: AventaMed – Typmpanostomy Tube Insertion Treatment Episodes: Practice Variation and Outcomes
This study will use real-world data (RWD) from electronic health records (EHR) and health plan claims to examine the outcomes following the insertion of tympanostomy tubes – the device of interest –among children. Tympanostomy tube insertion (TTI) accounts for nearly…
Feasibility of N-of-1 Trials in Children with Hypertension and Chronic Kidney Disease (NICHE-CKD) study
Hypertension (HTN) contributes to progression of renal failure and is an important modifiable risk factor for cardiovascular (CV) morbidity/mortality. Little is known about whether any specific medications are more effective than others in reducing BP for these patients, or whether…
Work with PEDSnet
Become part of a national pediatric learning health system dedicated to improving health and healthcare outcomes for children.