PKDnet: ARPKD Learning Network
Autosomal recessive polycystic kidney disease (ARPKD) is a rare disease, affecting ~1,500 children and young adults in the U.S. In severely affected patients, ARPKD can present in the neonatal period with massively enlarged kidneys and pulmonary hypoplasia, but the clinical…
Long-term Neurodevelopmental Effects in Neonates Following Treatment with Lacosamide
The Neurodevelopmental Outcomes Study is a retrospective, observational cohort study designed to compare the long-term neurocognitive outcomes of neonates treated with lacosamide versus other antiseizure medications (ASMs) for neonatal seizures. Neonatal seizures, which occur in 1.4 to 3.6 per 1,000…
Tracheostomy and Long-term Ventilator Dependence (LMTV) Computable Phenotype
Patients with LTMV are a small, heterogeneous population who are at significant risk of morbidity and mortality. They place an enormous stress on the healthcare system and caregivers, requiring lengthy hospital stays and frequent readmission. Research efforts to improve understanding…
Identification and Treatment of Attention-Deficit/Hyperactivity Disorder Diagnosis or Related Symptoms in Children 2 to 5-Years-Old
Attention-Deficit/Hyperactivity Disorder (ADHD), the most prevalent childhood neurobehavioral disorder, is increasingly being identified in young children before they enter school. Identifying and treating ADHD symptoms in preschool-age children is important for mitigating the negative effects of this disorder on social-emotional…
Examining the Relationship between Substance Use and Suicide among Pediatric Patients: Exploring differences by Race and Ethnicity
Individuals who use substances are at high risk for suicide and suicide attempts. In fact, substance use disorder is documented as an important risk factor for suicidality (SUDs; Poorolajal et al., 2016; Armoon et al., 2021), including among adolescents (e.g.,…
Inconsistent Influenza Vaccinators: Population Characteristics and a Patient Centered Pilot Study
The “Population Characteristics of Inconsistent Influenza Vaccinators” study, part of the PEDSnet Scholars project, aims to explore and characterize pediatric patients who exhibit inconsistent influenza vaccination behaviors. Inconsistent vaccinators—children who receive the influenza vaccine in some seasons but not others—represent…
Creation of a Computable Phenotype in Childhood- Onset Arterial Ischemic Stroke (CAIS)
Previous studies of administrative databases often misclassified up to 73% of strokes by just using diagnosis codes. This study will develop and validate a computable phenotype that can more accurately identify patients in our multi-institution database using clinical and lab…
Cardiometabolic Risk Factors in Children with Congenital Heart Disease
Rationale – Children with congenital heart disease (CHD) have increased cardiovascular risk (CV) – Cardiometabolic risk factors are infrequently evaluated in children with CHD – Implementation gap between guidelines and actual practice Aims – Define prevalence of cardiometabolic risk factors…
USDHub: Urologic community resource network
The Urinary Stone Disease Hub (USDHub) is an innovative research initiative designed to advance the understanding, treatment, and prevention of urinary stone disease (USD), a condition that affects over 11% of the U.S. population and incurs healthcare costs exceeding $10…
Acute Kidney Injury (AKI) in Children with Chronic Kidney Disease (CKD)
Acute kidney injury (AKI) is defined as an abrupt loss of kidney function and is very common in children with chronic kidney disease (CKD). AKI is associated with high mortality rates in children and is thought to be a risk…
Investigating timing of diagnosis and equitable care in children with Turner syndrome
PEDSNet data will be used to identify temporal changes in timing of diagnosis following updated Turner syndrome guidelines in 2017, in addition to association of race, ethnicity and insurance status to timing of diagnosis. Existing dataset of children with Turner…
All of Us Research Program Pediatric Enrollment: Estimating the phenotypes landscape in Future Pediatric Research Repository
The All of Us Research Program (https://allofus.nih.gov) is a national initiative that is enrolling participants who reflect the diversity of the United States, to build the largest and most diverse biomedical research repository. Recently, the All of Us Research program…
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…
PCEN: Impact of social drivers of health on pediatric kidney transplant outcomes
Organs are a limited resource that must be rationed. There are over 103,000 individuals on the national transplant waiting list in the United States and many will die while waiting for a transplant. Thus equitable allocation and responsible stewardship of…
The Comparative Effectiveness of Adjuvant Adenoidectomy in Surgical Management of Otitis Media
Kavita Dedhia is an assistant professor in otolaryngology at the University of Pennsylvania (UPENN) and Children’s Hospital of Philadelphia (CHOP). She has clinical expertise in pediatric otolaryngology, specifically chronic ear disease. Dr. Dedhia has recently completed the Master in Health Policy Research program at…
Methods Supplement to Support Innovative Research on AI and Large Language Models (LLMs) in Patient-Centered CER
Structured clinical data, typically derived from claims or electronic health records (EHR), most closely reflects operational activity, in particular activity that is reimbursable or expends health system resources. These data record actions and results, often in granular detail, but provide…
Achieving Equity: Inclusion of Adults with Congenital Heart Disease (CHD) Living with Neurodevelopmental Disorders (NDDs) in Patient-Centered Outcomes Research
Congenital heart disease (CHD) is an abnormality of the heart that patients are born with, and it is the most common birth defect, occurring in about one in 100 births. Because of better medical and surgical care, adults with CHD…
Long-term Neurocognitive Effects in Neonates Following Treatment with Lacosamide
The Neurocognitive Developmental Outcomes Study is a retrospective, observational cohort study designed to compare the long-term neurocognitive outcomes of neonates treated with lacosamide versus other antiseizure medications (ASMs) for neonatal seizures. Neonatal seizures, which occur in 1.4 to 3.6 per…
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