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…
Creation of a Computable Phenotype in Childhood- Onset Arterial Ischemic Stroke (CAIS)
Previous studies of administrative databases often misclassified up to 73% of strokes by just using diagnosis codes. This study will develop and validate a computable phenotype that can more accurately identify patients in our multi-institution database using clinical and lab…
Tracheostomy and Long-term Ventilator Dependence (LMTV) Computable Phenotype
Patients with LTMV are a small, heterogeneous population who are at significant risk of morbidity and mortality. They place an enormous stress on the healthcare system and caregivers, requiring lengthy hospital stays and frequent readmission. Research efforts to improve understanding…
All of Us Research Program Pediatric Enrollment: Estimating the phenotypes landscape in Future Pediatric Research Repository
The All of Us Research Program (https://allofus.nih.gov) is a national initiative that is enrolling participants who reflect the diversity of the United States, to build the largest and most diverse biomedical research repository. Recently, the All of Us Research program…
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…
Development and Validation of an Equitable Computable Phenotype for Classifying Pediatric Sleep Deficiency in Electronic Health Records
Sleep deficiency remains one of the most prominent and unaddressed public health concerns in pediatric healthcare settings. Pediatric sleep disparities are prominent across minoritized racial subpopulations in the dimensions of sleep duration, timing, alertness, behaviors, and quality/disorders. Despite the evidence…
Development and Validation of an Equitable Computable Phenotype for Classifying Pediatric Sleep Deficiency in Electronic Health Records
Sleep deficiency remains one of the most prominent and unaddressed public health concerns in pediatric healthcare settings. Pediatric sleep disparities are prominent across minoritized racial subpopulations in the dimensions of sleep duration, timing, alertness, behaviors, and quality/disorders. Despite the evidence…
Developing toolkit to control for missing data
Distributed health data networks (DHDNs) that leverage electronic health records (EHRs) (e.g., eMerge, pSCANNER, PEDSnet) have gained substantial interests in recent years, as they a) eliminate the need to create, maintain, and secure access to central data repositories, b) minimize…
Semantic Data Quality Standards for Multi-Center Clinical Research Studies and Networks
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….
A Distributed Learning Framework for Integrating Evidence in Clinical Research Networks
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…
A Two-Stage Meta-Regression Framework for Precision Medicine Using Data from Clinical Data Research Networks
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…
SPARK Registry- PEDSnet Linkage Pilot
The Simons Foundation Powering Autism Research for Knowledge (hereinafter referred to as SPARK)Registry was established to recruit, engage, and retain a community of 50,000 individuals with ASD along with their family members in the United States to identify the causes…
Atkinson Systemic Lupus Erythematosis
Aim 1: It is difficult to perform adequate clinical trials in pediatric diseases such as systemic lupus erythematosus (SLE) is a major challenge. To improve strategies necessary for identifying patients for trial recruitment electronic health record (EHR) algorithms were developed and tested…
Automating Quality and Safety Benchmarking for Children: Meeting the Needs of Health Systems and Patients
Our aim is to implement and test electronic measures of outpatient pediatric healthcare quality and safety using the PCORI Common Data Model.The PCORnet Common Data Model is a way of organizing data, including data mined directly from the electronic health…
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