Advancing Patient Centered Assessment to Reduce Disparities in Pediatric Primary Chronic Pain across the Continuum of Care
One in four children experience chronic pain worldwide. Primary chronic pain is the most common type of chronic pain in childhood and is associated with negative impact on physical, psychological, and social functioning. Many children have mental health symptoms (e.g.,…
Comparative Effectiveness of Emerging Medications in Children with Inflammatory Bowel Disease (COMPARE)
Crohn’s disease (CD) and ulcerative colitis (UC) are chronic inflammatory bowel diseases (IBDs) that affect approximately 1.2 million individuals in the United States, cost over $6 billion annually, and cause substantial patient morbidity, missed work and school, and diminished quality…
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…
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…
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…
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…
A Learning Health Systems Approach to Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis in Children
Anti-neutrophil cytoplasmic antibody-associated vasculitis (AAV) is an understudied, chronic inflammatory disease in children for which only half of children reach remission by 6-months and approximately 7% do not survive past young adulthood. Due to its rarity, there are no large…
Leveraging the electronic health record to characterize and optimize care delivery for children with cerebral palsy
Leveraging the electronic health record to characterize and optimize care delivery for children with cerebral palsy: Cerebral palsy (CP) is the most common physical disability of childhood, but it is highly heterogeneous with respect to its severity, response to therapy,…
Comparative effectiveness of VNS versus continued pharmacologic treatment of Lennox-Gastaut Syndrome: reducing emergency seizure care and improving functional outcomes
Lennox-Gastaut syndrome, or LGS, is a rare form of epilepsy that has no cure. Epilepsy is a condition in which electrical activity in the brain causes seizures. LGS often starts before the age of four. Children with LGS often have…
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…
Leveraging the electronic health record to characterize and optimize care delivery for children with cerebral palsy
Leveraging the electronic health record to characterize and optimize care delivery for children with cerebral palsy: Cerebral palsy (CP) is the most common physical disability of childhood, but it is highly heterogeneous with respect to its severity, response to therapy,…
Exploring PedsNet Capabilities in T2 Diabetes in the US (Invokana)
Once a relatively rare occurrence, the incidence rates of type 2 diabetes among children and adolescents continues to increase (SEARCH). In adults, oral hyperglycemic agents in conjunction with diet and exercise is an important treatment option used to control blood…
Using EHR Data to Evaluate the Burden of Diabetes Mellitus in a National Network of Children’s Hospital Health Systems
Diabetes mellitus is a group of disorders characterized by hyperglycemia resulting from defects in insulin production, insulin action, or both. In children and adolescents 0-17 years-old, pediatric diabetes mellitus (PDM) is one of the more common chronic diseases. Mounting evidence…
A Two-Stage Meta-Regression Framework for Precision Medicine Using Data from Clinical Data Research Networks
Pediatric Chron’s Disease (PCD) is a chronic inflammatory bowel disease (IBD) that has been recognized as one of the most important chronic diseases that affect children and adolescents, with increasing incidence in youth of varying ages. Literature presents gaps in…
Development of Brief Screening Algorithm for Early Identification of VWD in Women (Developing Primary Care Algorithms for Early Identification of Young Women with von Willebrand Disease)
Bleeding disorders in women are an under-recognized and under-treated condition, and von Willebrand Disease (VWD) is the most common bleeding disorder diagnosed in women. This study will develop a screening algorithm for VWD that incorporates a brief bleeding history and…
Atkinson Systemic Lupus Erythematosis
Aim 1: It is difficult to perform adequate clinical trials in pediatric diseases such as systemic lupus erythematosus (SLE) is a major challenge. To improve strategies necessary for identifying patients for trial recruitment electronic health record (EHR) algorithms were developed and tested…
Safety & Effectiveness of Biologic Therapies
This is a retrospective observational study using a national sample with a pairwise treatment comparison in a so‐called ‘matrix model’ design. The aim of this study is to evaluate the comparative risks for serious infections, cardiovascular events, and incident cancer…
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