Active Studies

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Vasoactive Selection in Pediatric Septic Shock and the Use of Cardiac Point-of-Care Ultrasound: A Retrospective Registry Analysis Across Multicenter Pediatric Emergency Medicine and Pediatric Critical Care

Pediatric septic shock requires rapid recognition of cardiovascular failure and timely treatment to restore adequate tissue perfusion. Vasoactive medications are central to management, yet considerable uncertainty remains regarding the optimal first‑line agent. Although guidelines recommend tailoring vasoactive choice to a…

Childhood Neighborhood Exposures and Pediatric Multiple Sclerosis

Question 1: How can we identify children with MS using ICD-10 codes in the PEDSnet dataset Question 2: How do neighborhood exposures influence the risk of pediatric MS development Aim 1: Validate a computable phenotype to identify pediatric MS. Aim…

Preventing Suicide among Sexual and Gender Diverse Youth

Suicide is the second leading cause of death among young adults in the United States. Sexual and gender diverse young adults (SGDYA) are at particularly high risk. SGDYA includes individuals who are lesbian, gay, bisexual, transgender, queer, or of another…

Alternative Approaches for Managing Blood Pressure in Children with Chronic Kidney Disease (PRESERVE 2.0)

Research question: What clinic BP threshold should be targeted for kidney and cardiovascular protection in children with CKD? Should RAASi be first-line anti-hypertensive therapy for all children with CKD? Aims: Aim 1: Establish the pragmatic trial infrastructure by building on…

The Declining Health of US Children

How has US children’s health evolved over time, and how does the health, resilience, and wellbeing of US children compare to that of 18 comparator countries in the Organization for Economic Cooperation and Development (OECD)? Aims: To evaluate temporal trends…

PEDSnet-Based Graph Embedding Pilot for Patient Similarity Modeling: FL-GNN Concept Validation Using Harmonized Pediatric Data

PEDSnet provides a harmonized, multi-institutional pediatric clinical dataset that enables cross-site research within a unified governance framework. However, traditional EHR analyses rely on diagnosis-based cohort definitions or tabular feature representations that do not fully capture the relational structure of longitudinal…

Identifying Pediatric Pancreatitis and Predicting Pancreatic Diabetes (T3cD)

Type 3c diabetes (T3cD) is a distinct form of diabetes related to diseases of the exocrine pancreas. In the setting of pancreatitis, T3cD affects 4-9% of children and is associated with long-term morbidity and increased mortality. T3cD is understudied especially…

Comparing Alternative Strategies for Pharmacologic Management of Attention-Deficit/Hyperactivity Disorder in Children and Adolescents

Should clinicians start treating children and youth diagnosed with ADHD with stimulant or nonstimulant classes of medications? Answering this question will inform clinicians of which class of medications should treatment start with, and for which patients, as well as which…

AR2 (Autism Replication & Reproducibility) Center – NIH Autism Data Science Initiative Task 4 Application

PEDSnet and the AR2 Center will collaborate to enable model validation and replication activities using pediatric data. The focus is on leveraging existing data within PEDSnet’s Common Data Model (CDM) to support independent validation of models and methods developed under…

Ischemic Stroke Incidence and Risk Factors in Adults with Congenital Heart Disease

It is well known that adults with CHD have higher rates of stroke and stroke at younger ages, compared to the general population. We aim to better characterize this risk in a large US patient population, and to better understand…

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.,…

Determining Barriers Leading to Inferior Survival for Black and Hispanic Patients with Hodgkin Lymphoma: A Patient-Centered Study

Five-year relative survival rates for Hodgkin lymphoma (HL) are excellent at ~90%, yet Black and Hispanic patients have worse survival outcomes than White patients across all age groups (children, young adults, and older adults). HL’s age distribution and generally high…

Effects of PTH on Rates of Skeletal Fractures in CKD

The purpose of this study is to understand the effects of parathyroid hormone levels on risks of skeletal fractures among children with chronic kidney disease. Investigators will utilize the existing row-level PEDSnet dataset previously created to examine the effects of…

Alkali therapy and Linear Growth in Children with CKD

Children with chronic kidney disease (CKD) have higher rates of hospitalizations, metabolic abnormalities, cardiovascular disease, and growth restriction, compared to their healthy counterparts. 1-4 Growth failure is common in pediatric CKD; affecting up to 35% of these children. 5 Children…

Acute Kidney Injury Phenotypes and Long-Term Major Adverse Kidney Events

The purpose of our study is to evaluate the long-term outcomes after AKI in critically ill children and identify the risk factors associated with these outcomes. Our central hypothesis is that long-term major adverse kidney events (MAKE; a composite of…

Distinguishing clinical manifestations, treatment, and long-term outcomes of pseudohypoaldosteronism (PHA) vs congenital adrenal hyperplasia (CAH)

Pseudohypoaldosteronism can be a potentially fatal disease involving a disruption in the mineralocorticoid aldosterone. Given aldosterone’s role in maintaining fluid homeostasis, an imbalance results in hypokalemia, hypernatremia, and metabolic acidosis in newborns. The clinical presentation of pseudohypoaldosteronism mirrors congential adrenal…

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…

PEDSnet: Advancing Child- and Family-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…

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…

Therapeutic Use and Access in Pediatric Vitiligo

Vitiligo is an acquired disorder of skin depigmentation present in roughly 1% of the population which can be psychologically devastating, particularly in children and patients with skin of color. It is an autoimmune disease of T-cell mediated melanocyte destruction that…

Computable phENotype To Identify Pulmonary Embolism in chilDrEn: The CENTIPEDE Study

This study will validate a computable phenotype to identify children with pulmonary embolism (PE), with a particular focus on PE in cardiac populations. Hilary Whitworth and the CENTIPEDE Study Team will validate outcomes, interventions, and risk stratification in a multicenter…

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