Skeletal and Cranial Growth Among Children with Achondroplasia
Achondroplasia, the most common form of disproportionate short stature, is caused by a mutation in the fibroblast growth factor receptor 3 (FGFR3) gene. Affected children may experience severely impaired foramen magnum growth during the first years of life, which may…
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…
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,…
Population Health in Children and Adolescents with Sex and Gender Differences
This study examined the prevalence of medical diagnoses in youth with sex chromosome aneuploidy (SCA) compared to matched controls in a large pediatric health learning system (PEDSnet). There was a significantly higher relative risk of having diagnoses within the Cardiovascular,…
The RECOVER Post-Acute Sequelae of SARS-CoV-2 (PASC) Pediatric PCORnet Electronic Health Record (EHR) Cohort Study
Investigators from two of the nation’s top health research institutions, Weill Cornell Medicine (WCM) and Children’s Hospital of Philadelphia (CHOP), are spearheading a new study aimed at understanding more about long-haul COVID-19. Dr. Christopher Forrest, professor of pediatrics and health…
Associations Between ASD, GD, and Mental Health Comorbidities Among U.S. Populations of Youth aged 9-18
Research shows that Autism Spectrum Disorder (ASD) and gender dysphoria co-occur more often than by chance. Recent studies suggest that the incidence of ASD is nearly six times higher among youth referred to gender clinics, and the incidence of gender…
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…
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…
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…
Preserving Kidney Function in Children with Chronic Kidney Disease
Chronic kidney disease, or CKD, is a health problem in which the kidneys don’t work well to remove waste from the blood. About half of all children with CKD also have high blood pressure, which increases their risk of kidney…
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,…
Creation of Computable Alopecia Areata Phenotype to Evaluate Epidemiology of Pediatric Alopecia Areata and Potential Health Care Disparities in care among children living with Alopecia Areata
Alopecia areata is a chronic, T-cell-mediated disease that targets hair follicles and causes patches of nonscarring hair loss. Despite being relatively common (prevalence of 1-2%), current studies on alopecia areata epidemiology are conflicting, and no large-scale epidemiologic studies have been…
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…
NESTR1: Comparative Effectiveness of Alternative Approaches for Wound Closure
There are three methods for closure of wounds that result from surgeries or trauma: sutures, staples, and skin adhesives. The purpose of this project is to compare each of these skin closure approaches in terms of the types of skin…
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%…
COVID-Miner: Leveraging Artificial Intelligence to Facilitate Early Detection of Coronavirus Infection and Deteriorationin the Pediatric Population
This study is specifically directed at developing an accurate and scalable approach to facilitate early detection of coronavirus infection and deterioration in the pediatric population. We propose to use state-of-the-art artificial intelligence (AI) technologies, including natural language processing (NLP) and…
Pharmacokinetics in Neonates Exposed to Lacosamide
Seizures are one of the most common neurologic emergencies in neonates, arising in ~3/1000term live births and are associated with significant mortality and neuro-developmental disability (Soul et al, 2018). In contrast to seizures in older children, most neonatal seizures result…
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