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…
PCORI Science of Engagement: Developing a multi-dimensional measure of adolescent engagement in research
Adolescent engagement in research is foundational to the patient-centered care of adolescents. However, there is limited information about the processes through which high-quality engagement occurs, and no valid and reliable way of measuring engagement quality in this important and developmentally…
PEDSnet Stakeholder-informed Patient-Centered Research Prioritization: Standard Process, Procedures, and Tools
The PEDSnet Stakeholder-informed Patient-Centered Research Prioritization: Standard Process, Procedures, and Tools is part of PEDSnet’s Phase 3 Infrastructure Grant from PCORI. A key goal of Phase 3 of PEDSnet is to meaningfully engage patients and families in research and research…
Implementing Blood Transfusion Recommendations in the PICU
The purpose of this study is to create and validate a computable phenotype for patient cohorts at risk for unnecessary transfusion and to deploy and evaluate the implementation of computerized decision support tools designed to enhance compliance with blood transfusion…
Vision Screening in Young Children with Autism
Children with Autism Spectrum Disorder (ASD) have greater unmet healthcare needs compared with typically developing peers, including delays in seeking medical care, inadequate insurance coverage, and inability to access necessary therapy services. Many children with ASD do not receive recommended…
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…
RSV I-PREP: Improving Evidence-Based Implementation of RSV Immuno-Prophylaxis Within Ethical and Policy Contexts
Jennifer Kusma, MD, MS is a pediatrician and junior clinical investigator focused on improving the 3 evidence-base for the health care policy and access for children with special health care needs (CSHCN). Dr. 4 Kusma’s long-term career goal is to become an…
Effect of pubertal hormones on Headache in Transmasculine Adolescents
Headache has been one of the top three causes of disability adjusted life years for the past three decades among adolescents and young adults. The inspiration for this research comes from the disproportionately higher burden that falls on girls and…
Prediction Modeling of the Impact of Area Deprivation on Systolic Blood Pressure Trajectory in Youth
Hypertension (HTN) is the primary cause of cardiovascular disease (CVD) in the United States. Individuals with the greatest risk of developing HTN in adulthood have elevated blood pressure (BP) and accelerated BP trajectories in childhood and adolescence, beginning at 9…
The COvid and Diabetes Assessment (CODA) Study
Several studies have found that infection with SARS-CoV-2 and COVID-19 diagnosis are associated with the development and progression of both Type 1 (T1D) and Type 2 Diabetes (T2D), possibly through infection of beta cells, increased insulin resistance, increased inflammation and…
Defining the epidemiology and impacts of iron overload in children undergoing bone marrow transplants for hematological disorders.
This study focuses on iron overload in pediatric patients undergoing hematopoietic stem cell transplantation (HSCT) for non-malignant blood disorders (NMBD). In recent years, HSCT for NMBD has increased, but little data exists on how iron overload, often caused by blood…
The Effects of Dupilumab on the development of T1 associated disease
This study investigates whether dupilumab, a Type 2 inflammation-blocking agent commonly used to treat allergic diseases, is associated with an increased risk of developing Type 1 diseases in children. Using the PEDSnet electronic health record network, researchers conducted a multicenter…
Work with PEDSnet
Become part of a national pediatric learning health system dedicated to improving health and healthcare outcomes for children.