History

PEDSnet is a large, national community of hospitals and healthcare organizations, researchers and clinicians, and patients and families. This community works together to identify the most important research questions that can reduce children's suffering and support their healthy development. When we do research, our goal is to conduct it as inexpensively and quickly as possible, while engaging all of our stakeholders in the research process along the way.

PEDSnet is a multi-specialty network that conducts observational research and clinical trials across multiple children's hospital health systems. We are governed by parents and senior leaders in these health systems. PEDSnet has produced reusable and expandable governance, logistical, informatics, regulatory, scientific, and training resources, organized as a Pediatric Research Commons. PEDSnet has created a longitudinal data resource that dates back to 2009, cutting across all pediatric diseases, and including all pediatric specialties.

Why PEDSnet Was Formed

There is a big gap between great pediatric healthcare and the services that children receive today.

The size of this gap is inversely related to the quantity and quality of evidence that informs clinical decision-making. Better evidence from well-done research studies leads to smaller gaps. In addition, when scientific evidence is available, it often is not used to provide children with the care they should receive. In PEDSnet, we believe that our health system can be better at meeting the needs of children to reduce their suffering and improve their health.

In its current state, pediatric research generates evidence too slowly and at too high a cost. It does not answer the questions that are often most important to patients, families, and health system leaders or ensure that when new knowledge is produced it is translated into practice. Too often children must rely on hand-me-down evidence from adult studies. Because many pediatric health conditions are uncommon or rare, no single institution has a sufficient number of patients to produce generalizable research that can directly inform shared clinical decisions that are made by parents, children and youth, and their clinicians. A persistent challenge for pediatric research is the lack of a national interconnected, multi-institutional infrastructure.

PEDSnet was formed to solve these challenges. Our goal is to improve the health of the nation’s children by creating a multi-institutional network of health systems that collaborate with patients, families, and clinicians to identify and answer the most important research questions rapidly and inexpensively with results quickly implemented to inform decision-making about the best treatments to improve the health of each child.