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 the only PCORnet® Clinical Research Network (CRN) focused exclusively on improving child health and pediatric […]
To address missed gaps in data quality, the purpose of this study is to create actionable guidelines for testing and reporting data quality, building on current practice and expanding it to address fitness for use and alignment with clinical meaning. Aim 1: Define specific guidelines for testing that allow users to assess the fitness of […]
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 a type of medicine called a TNFi. A TNFi can help patients become symptom-free. Patients […]
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% of patients with HSP will develop renal involvement with about 20% having a nephritic or […]
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 workers who joined the HERO registry from April 10 to May 22, 2020. Setting: All […]
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 failure. When the kidneys fail, patients lose most of their kidney function and need dialysis […]
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 several parts of the heart or the way the blood circulates. Nearly 150,000 adults in […]
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 long-term health problems, such as physical disabilities. Treatments for LGS include medicine and surgery. Both […]
Rare events such as gastrointestinal bleeding, clinical sites independently often contain insufficient number of cases leading to challenges in characterizing the effect sizes of risk factors for adverse events and conducting accurate risk prediction. Individual patient-level information at each site is often protected by privacy regularities and rules, and direct data integration across multiple clinical […]
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 understanding how to synthesize partial or pieces of evidence from multiple sites using distributed analysis […]