PCORI

Study Funding Source: PCORI

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 existing resources in PCORnet, PEDSnet, and PRESERVE.Aim 2: Compare the effects of conventional (<90th percentile), […]

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 outcomes are best served by which medication class. By identifying patients suitable for non-stimulants, this […]

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 of life. Pediatric onset IBD (PIBD) is a distinct entity, often presenting with more severe […]

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 the only PCORnet Clinical Research Network (CRN) focused exclusively on improving child health and pediatric […]

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 limited information about attribution, and may not accurately reflect medical reasoning. Narrative clinical notes are […]

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 are an increasing part of the population. Some studies have suggested up to a third […]

PCORnet Bariatric Study (PBS)

The use of bariatric surgery as a treatment for severe obesity has increased dramatically over the past two decades, but there have been few high-quality, long-term studies comparing the outcomes of different procedures. Prior studies have also not been large enough to examine differences in outcomes across important patient subgroups, including older adults (≥65 years […]

PCORI Science of Engagement: Developing a multi-dimensional measure of adolescent engagement in research

Adolescent engagement in research is foundational to the patient-centered care of adolescents. However, there is limited information about the processes through which high-quality engagement occurs, and no valid and reliable way of measuring engagement quality in this important and developmentally unique patient population. Measuring engagement quality from the perspective of adolescents is important for quantifying […]

PEDSnet Stakeholder-informed Patient-Centered Research Prioritization: Standard Process, Procedures, and Tools

The PEDSnet Stakeholder-informed Patient-Centered Research Prioritization: Standard Process, Procedures, and Tools is part of PEDSnet’s Phase 3 Infrastructure Grant from PCORI. A key goal of Phase 3 of PEDSnet is to meaningfully engage patients and families in research and research decision-making, and use stakeholder-informed priorities as a framework for future PEDSnet project funding decisions. This […]

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