PEDSnet: a National Pediatric Learning Health System

Forrest, Christopher B.; Margolis, Peter A.; Bailey, Leonard C.; Marsolo, Keith; Beccaro, Mark A. Del; Finkelstein, Jonathan A.; Milov, David E.; Vieland, Veronica J.; Wolf, Bryan A.; Yu, Feliciano; Kahn, Michael G.

doi:10.1136/amiajnl-2014-002743

Cited by 182 publications

(179 citation statements)

References 23 publications

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“…Each year these institutions care for over two million children. 24 In addition to developing data, regulatory, scientific, and governance infrastructures across children's hospitals, we are explicitly linking PEDSnet to three disease-specific networksImproveCareNow (pediatric inflammatory bowel disease), the National Pediatric Cardiology Quality Improvement Collaborative (complex congenital heart disease), and a newly formed Healthy Weight network (childhood obesity).…”

Section: From Prototype To National Pediatric Learning Health Systemmentioning

confidence: 99%

PEDSnet: How A Prototype Pediatric Learning Health System Is Being Expanded Into A National Network

et al. 2014

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Except for a few conditions, pediatric disorders are rare diseases. Because of this, no single institution has enough patients to generate adequate sample sizes to produce generalizable knowledge. Aggregating electronic clinical data from millions of children across many pediatric institutions holds the promise of producing sufficiently large data sets to accelerate knowledge discovery. However, without deliberately embedding these data in a pediatric learning health system (defined as a health care organization that is purposefully designed to produce research in routine care settings and implement evidence at the point of care), efforts to act on this new knowledge, reducing the distress and suffering that children experience when sick, will be ineffective. In this article we discuss a prototype pediatric learning health system, ImproveCareNow, for children with inflammatory bowel disease. This prototype is being scaled up to create PEDSnet, a national network that will support the efficient conduct of clinical trials, observational research, and quality improvement across diseases, specialties, and institutions.

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Section: From Prototype To National Pediatric Learning Health Systemmentioning

confidence: 99%

PEDSnet: How A Prototype Pediatric Learning Health System Is Being Expanded Into A National Network

et al. 2014

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“…120 Finally, PEDSnet, a pediatric project within the Patient Centered Outcomes Research Institute is harmonizing data across 8 pediatric academic medical centers, 2 pediatric quality improvement collaboratives, Express Scripts, and IMS Health, which aggregates claims data across payers. 121 Simultaneously with the explosion in high-quality databases, the nomenclature historically used to describe congenital heart lesions has been harmonized by the Multi-societal Database Committee for Pediatric and Congenital Heart Disease. 122,123 Patient information can now be linked, albeit with some difficulties, across databases to facilitate research on medical outcomes, quality of care, and financial costs related to CHD.…”

Section: Cardiac Registries and Databasesmentioning

confidence: 99%

Trends in Congenital Heart Disease

2016

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“…22 There is growing interest in registries as a basis for tracking clinical outcomes and for quality improvement or research on treatment effectiveness. 23 Some of the large recent efforts include the PCORnet network, 24 which has funded 11 Clinical Data Research Networks and 18 Patient Powered Research Networks. However, integrating the available information in a standardized format across multiple sites is very difficult, and financial support for these efforts is another formidable challenge.…”

Section: Variations In Clinical Practice and Thementioning

confidence: 99%

Report of a workshop on research gaps in the treatment of cerebral palsy

et al. 2016

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Cerebral palsy (CP) is heterogeneous in etiology and manifestations, making research into relevant therapies difficult and limiting the generalizability of the results. We report here on the NIH CP symposium, where stakeholders from academic, clinical, regulatory, and advocacy backgrounds discussed the major challenges and needs for moving forward with clinical research in CP, and outlined priorities and action items. New information is constantly generated through research into pathogenesis and etiology. Clinical research and new therapeutic approaches need to keep pace, through large data registry integration and new research designs. Development of standardized data collection, increasing academic focus on CP research, and iterative approaches to treatment throughout the patients' lives, have all been identified as areas of focus. The workshop identified critical gaps and areas of focus to increase the evidence base for therapeutic approaches to determine which treatments work best for which patients in the near future. These include consolidation and optimization of databases and registries, updates to the research methodology, and better integration of resources and stakeholders. DEFINING THE PROBLEM Cerebral palsy (CP) is a group of neurologic disorders of motor control with onset early in development and persistence throughout the lifespan. CP is the most common cause of motor disability in childhood, with an incidence of 2 to 3 per 1,000 live births, occurring 20 to 30 times more frequently in premature or low-birth-weight infants.1 These disturbances of movement and posture cause activity limitations.2 Those activity limitations resulting from spinal or neuromuscular disorders are excluded from the diagnosis. Various etiologies can cause the CP clinical spectrum but all have a disruption of motor control in common. In addition to prematurity, other known etiologies include developmental defects of the brain, perinatal stroke, hypoxia, shock, and fetal or neonatal inflammation/infection. However, CP may also occur in low-risk children for whom there is no obvious etiology or risk factor. CP is often accompanied by comorbidities such as seizures, communication deficits, hearing and vision deficits, and intellectual disability. There is a wide spectrum of functional outcomes from normal educational, career, and social activities to complete disability and dependence.An upper age limit for acquired pathology in the brain leading to CP is not absolute, but the onset of symptoms and the diagnosis are generally expected to occur by the age of 2. Given the heterogeneity in terms of etiology, pathology, clinical manifestations, and progression, it is best to consider CP as a collection of conditions rather than one uniform entity for developing treatment guidelines or conducting research on potential therapies.To address pressing research challenges, the National Institute of Neurological Disorders and Stroke (NINDS) organized a workshop with the main goal of discussing research needed to determine best ...

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PEDSnet: a National Pediatric Learning Health System

Cited by 182 publications

References 23 publications

PEDSnet: How A Prototype Pediatric Learning Health System Is Being Expanded Into A National Network

PEDSnet: How A Prototype Pediatric Learning Health System Is Being Expanded Into A National Network

Trends in Congenital Heart Disease

Report of a workshop on research gaps in the treatment of cerebral palsy

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