Scholars@Duke
Keith Allen Marsolo

Keith Allen Marsolo

Professor in Population Health Sciences
Population Health Sciences
keith.marsolo@duke.edu
300 W Morgan St, Office 636, Durham, NC 27701
300 W Morgan St, Office 636, Durham, NC 27701

Selected Publications

Impact of electronic health record updates and changes on the delivery and monitoring of interventions in embedded pragmatic clinical trials.

Journal Article Contemp Clin Trials · November 17, 2024 The NIH Pragmatic Trials Collaboratory supports the design and conduct of 32 embedded pragmatic clinical trials, and many of these trials rely on data from the electronic health record (EHR) to monitor outcomes and/or use functionality provided by the EHR ... Full text Link to item Cite

The FDA Sentinel Real World Evidence Data Enterprise (RWE-DE).

Journal Article Pharmacoepidemiol Drug Saf · October 2024 PURPOSE: The US Food and Drug Administration's Sentinel Innovation Center aimed to establish a query-ready, quality-checked distributed data network containing electronic health records (EHRs) linked with insurance claims data for at least 10 million indiv ... Full text Link to item Cite

Kidney and Cardiovascular Effectiveness of SGLT2 Inhibitors vs GLP-1 Receptor Agonists in Type 2 Diabetes.

Journal Article J Am Coll Cardiol · August 20, 2024 BACKGROUND: Emerging data suggest that glucagon-like peptide-1 receptor agonists (GLP-1 RAs) improve kidney outcomes for people with type 2 diabetes (T2D). Direct comparisons of the kidney and cardiovascular effectiveness of GLP-1 RA with sodium-glucose co ... Full text Open Access Link to item Cite

Association of Cardiologist Clinic Visits with Cardiovascular Primary Prevention Outcomes Among People with HIV from Underrepresented Racial and Ethnic Groups in the Southern United States.

Journal Article medRxiv · August 9, 2024 BACKGROUND: People with HIV (PWH) are at elevated risk for atherosclerotic cardiovascular disease (ASCVD). Underrepresented racial and ethnic groups (UREGs) with HIV in the southern U.S. are disproportionately affected, yet whether cardiology specialist ca ... Full text Link to item Cite

Enhancing Postmarketing Surveillance of Medical Products With Large Language Models.

Journal Article JAMA Netw Open · August 1, 2024 IMPORTANCE: The Sentinel System is a key component of the US Food and Drug Administration (FDA) postmarketing safety surveillance commitment and uses clinical health care data to conduct analyses to inform drug labeling and safety communications, FDA advis ... Full text Link to item Cite

Public Health Surveillance in Electronic Health Records: Lessons From PCORnet.

Journal Article Prev Chronic Dis · July 11, 2024 INTRODUCTION: PCORnet, the National Patient-Centered Clinical Research Network, is a large research network of health systems that map clinical data to a standardized data model. In 2018, we expanded existing infrastructure to facilitate use for public hea ... Full text Link to item Cite

Kidney and Cardiovascular Effectiveness of Empagliflozin Compared With Dipeptidyl Peptidase-4 Inhibitors in Patients With Type 2 Diabetes.

Journal Article Am J Cardiol · June 15, 2024 Placebo-controlled trials of sodium-glucose co-transporter-2 inhibitors demonstrate kidney and cardiovascular benefits for patients with type 2 diabetes and chronic kidney disease (CKD). We used real-world data to compare the kidney and cardiovascular effe ... Full text Open Access Link to item Cite

912-P: Kidney and Cardiovascular Effectiveness of SGLT2 Inhibitors Compared with GLP-1 Receptor Agonists in Patients with Type 2 Diabetes

Conference Diabetes · June 14, 2024 Introduction & Objective: In placebo-controlled trials, SGLT2 inhibitors (SGLT2i) and GLP-1 receptor agonists (GLP1RA) improve kidney and cardiovascular outcomes. However, direct comparisons are lacking.Methods: ... Full text Cite

Concordance With Screening and Treatment Guidelines for Chronic Kidney Disease in Type 2 Diabetes.

Journal Article JAMA Netw Open · June 3, 2024 IMPORTANCE: Chronic kidney disease (CKD) is an often-asymptomatic complication of type 2 diabetes (T2D) that requires annual screening to diagnose. Patient-level factors linked to inadequate screening and treatment can inform implementation strategies to f ... Full text Open Access Link to item Cite

Cardiology Encounters for Underrepresented Racial and Ethnic Groups with Human Immunodeficiency Virus and Borderline Cardiovascular Disease Risk.

Journal Article J Racial Ethn Health Disparities · June 2024 BACKGROUND: Underrepresented racial and ethnic groups (UREGs) with HIV have a higher risk of cardiovascular disease (CVD) compared with the general population. Referral to a cardiovascular specialist improves CVD risk factor management in high-risk individ ... Full text Link to item Cite

Genetic sex validation for sample tracking in next-generation sequencing clinical testing.

Journal Article BMC Res Notes · March 3, 2024 OBJECTIVE: Data from DNA genotyping via a 96-SNP panel in a study of 25,015 clinical samples were utilized for quality control and tracking of sample identity in a clinical sequencing network. The study aimed to demonstrate the value of both the precise SN ... Full text Link to item Cite

Identifying a stable and generalizable factor structure of major depressive disorder across three large longitudinal cohorts.

Journal Article Psychiatry Res · March 2024 The Patient Health Questionnaire 9 (PHQ-9) is the current standard outpatient screening tool for measuring and tracking the nine symptoms of major depressive disorder (MDD). While the PHQ-9 was originally conceptualized as a unidimensional measure, it has ... Full text Link to item Cite

Collecting patient-reported outcome measures in the electronic health record: Lessons from the NIH pragmatic trials Collaboratory.

Journal Article Contemp Clin Trials · February 2024 The NIH Pragmatic Trials Collaboratory supports the design and conduct of 27 embedded pragmatic clinical trials, and many of the studies collect patient reported outcome measures as primary or secondary outcomes. Study teams have encountered challenges in ... Full text Link to item Cite

Assessing the harmonization of structured electronic health record data to reference terminologies and data completeness through data provenance

Journal Article Learning Health Systems · January 1, 2024 Introduction: (1) Assess the harmonization of structured electronic health record data (laboratory results and medications) to reference terminologies and characterize the severity of issues. (2) Identify issues of data completeness by comparing complement ... Full text Cite

Optimizing data integration in trials that use EHR data: lessons learned from a multi-center randomized clinical trial.

Journal Article Trials · September 1, 2023 BACKGROUND: Despite great promise, trials that ascertain patient clinical data from electronic health records (EHR), referred to here as "EHR-sourced" trials, are limited by uncertainty about how existing trial sites and infrastructure can be best used to ... Full text Link to item Cite

Potential bias and lack of generalizability in electronic health record data: reflections on health equity from the National Institutes of Health Pragmatic Trials Collaboratory.

Journal Article J Am Med Inform Assoc · August 18, 2023 Embedded pragmatic clinical trials (ePCTs) play a vital role in addressing current population health problems, and their use of electronic health record (EHR) systems promises efficiencies that will increase the speed and volume of relevant and generalizab ... Full text Link to item Cite

Equity and bias in electronic health records data.

Journal Article Contemp Clin Trials · July 2023 Embedded pragmatic clinical trials (ePCTs) are conducted during routine clinical care and have the potential to increase knowledge about the effectiveness of interventions under real world conditions. However, many pragmatic trials rely on data from the el ... Full text Link to item Cite

Assessing the impact of privacy-preserving record linkage on record overlap and patient demographic and clinical characteristics in PCORnet®, the National Patient-Centered Clinical Research Network.

Journal Article J Am Med Inform Assoc · February 16, 2023 OBJECTIVE: This article describes the implementation of a privacy-preserving record linkage (PPRL) solution across PCORnet®, the National Patient-Centered Clinical Research Network. MATERIAL AND METHODS: Using a PPRL solution from Datavant, we quantified t ... Full text Link to item Cite

Mis-mappings between a producer's quantitative test codes and LOINC codes and an algorithm for correcting them.

Journal Article J Am Med Inform Assoc · January 18, 2023 OBJECTIVES: To access the accuracy of the Logical Observation Identifiers Names and Codes (LOINC) mapping to local laboratory test codes that is crucial to data integration across time and healthcare systems. MATERIALS AND METHODS: We used software tools a ... Full text Link to item Cite

Establishing a framework for privacy-preserving record linkage among electronic health record and administrative claims databases within PCORnet®, the National Patient-Centered Clinical Research Network.

Journal Article BMC Res Notes · October 31, 2022 OBJECTIVE: The aim of this study was to determine whether a secure, privacy-preserving record linkage (PPRL) methodology can be implemented in a scalable manner for use in a large national clinical research network. RESULTS: We established the governance a ... Full text Link to item Cite

Standardizing, harmonizing, and protecting data collection to broaden the impact of COVID-19 research: the rapid acceleration of diagnostics-underserved populations (RADx-UP) initiative.

Journal Article J Am Med Inform Assoc · August 16, 2022 OBJECTIVE: The Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) program is a consortium of community-engaged research projects with the goal of increasing access to Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) tests in un ... Full text Link to item Cite

Evaluating fitness-for-use of electronic health records in pragmatic clinical trials: reported practices and recommendations.

Journal Article J Am Med Inform Assoc · April 13, 2022 OBJECTIVE: To empirically explore how pragmatic clinical trials (PCTs) that used real-world data (RWD) assessed study-specific fitness-for-use. METHODS: We conducted interviews and surveys with PCT teams who used electronic health record (EHR) data to asce ... Full text Link to item Cite

Broadening the reach of the FDA Sentinel system: A roadmap for integrating electronic health record data in a causal analysis framework.

Journal Article NPJ Digit Med · December 20, 2021 The Sentinel System is a major component of the United States Food and Drug Administration's (FDA) approach to active medical product safety surveillance. While Sentinel has historically relied on large quantities of health insurance claims data, leveragin ... Full text Link to item Cite

Enhancing the use of EHR systems for pragmatic embedded research: lessons from the NIH Health Care Systems Research Collaboratory.

Journal Article Journal of the American Medical Informatics Association : JAMIA · November 2021 ObjectiveWe identified challenges and solutions to using electronic health record (EHR) systems for the design and conduct of pragmatic research.Materials and methodsSince 2012, the Health Care Systems Research Collaboratory has served as ... Full text Cite

Neptune: an environment for the delivery of genomic medicine.

Journal Article Genet Med · October 2021 PURPOSE: Genomic medicine holds great promise for improving health care, but integrating searchable and actionable genetic data into electronic health records (EHRs) remains a challenge. Here we describe Neptune, a system for managing the interaction betwe ... Full text Link to item Cite

Lessons learned from the eMERGE Network: balancing genomics in discovery and practice.

Journal Article HGG Adv · January 14, 2021 The Electronic Medical Records and Genomics (eMERGE) Network, established in 2007, is a consortium of academic and integrated health systems conducting discovery and implementation research in translational genomics. Here, we outline the history of the net ... Full text Link to item Cite

PCORnet® 2020: current state, accomplishments, and future directions.

Journal Article J Clin Epidemiol · January 2021 OBJECTIVE: To describe PCORnet, a clinical research network developed for patient-centered outcomes research on a national scale. STUDY DESIGN AND SETTING: Descriptive study of the current state and future directions for PCORnet. We conducted cross-section ... Full text Link to item Cite

Testing the Use of Data Drawn from the Electronic Health Record to Compare Quality.

Journal Article Pediatr Qual Saf · 2021 INTRODUCTION: Health systems spend $1.5 billion annually reporting data on quality, but efficacy and utility for benchmarking are limited due, in part, to limitations of data sources. Our objective was to implement and evaluate measures of pediatric qualit ... Full text Link to item Cite

Participant choices for return of genomic results in the eMERGE Network.

Journal Article Genet Med · November 2020 PURPOSE: Secondary findings are typically offered in an all or none fashion when sequencing is used for clinical purposes. This study aims to describe the process of offering categorical and granular choices for results in a large research consortium. METH ... Full text Link to item Cite

Adapting Clinical Systems to Enable Adolescents' Genomic Choices.

Journal Article ACI open · July 2020 BACKGROUND: We offered adolescents personalized choices about the type of genetic results they wanted to learn during a research study and created a workflow to filter and transfer the results to the electronic health record (EHR). METHODS: We describe ada ... Full text Link to item Cite

Design and analytic considerations for using patient-reported health data in pragmatic clinical trials: report from an NIH Collaboratory roundtable.

Journal Article J Am Med Inform Assoc · April 1, 2020 Pragmatic clinical trials often entail the use of electronic health record (EHR) and claims data, but bias and quality issues associated with these data can limit their fitness for research purposes particularly for study end points. Patient-reported healt ... Full text Open Access Link to item Cite

Considerations for using distributed research networks to conduct aspects of randomized trials.

Journal Article Contemp Clin Trials Commun · March 2020 Stakeholders in the clinical research enterprise are aligned around the need to make clinical research in general, and randomized controlled trials in particular, more meaningful and efficient. To that end, we have built distributed research networks (DRNs ... Full text Link to item Cite

Assessing Quality of Surgical Real-World Data from an Automated Electronic Health Record Pipeline.

Journal Article J Am Coll Surg · March 2020 BACKGROUND: Significant analysis errors can be caused by nonvalidated data quality of electronic health records data. To determine surgical data fitness, a framework of foundational and study-specific data analyses was adapted and assessed using conformanc ... Full text Link to item Cite

The Genomics Research and Innovation Network: creating an interoperable, federated, genomics learning system.

Journal Article Genet Med · February 2020 PURPOSE: Clinicians and researchers must contextualize a patient's genetic variants against population-based references with detailed phenotyping. We sought to establish globally scalable technology, policy, and procedures for sharing biosamples and associ ... Full text Link to item Cite

Correction: The Genomics Research and Innovation Network: creating an interoperable, federated, genomics learning system.

Journal Article Genet Med · February 2020 An amendment to this paper has been published and can be accessed via a link at the top of the paper. ... Full text Link to item Cite

Assessing Quality of Real-World Data Supplied by an Automated Surgical Data Pipeline

Conference JOURNAL OF THE AMERICAN COLLEGE OF SURGEONS · October 1, 2019 Link to item Cite

Harmonizing Clinical Sequencing and Interpretation for the eMERGE III Network.

Journal Article Am J Hum Genet · September 5, 2019 The advancement of precision medicine requires new methods to coordinate and deliver genetic data from heterogeneous sources to physicians and patients. The eMERGE III Network enrolled >25,000 participants from biobank and prospective cohorts of predominan ... Full text Link to item Cite

Genetic determinants of risk in pulmonary arterial hypertension: international genome-wide association studies and meta-analysis.

Journal Article Lancet Respir Med · March 2019 BACKGROUND: Rare genetic variants cause pulmonary arterial hypertension, but the contribution of common genetic variation to disease risk and natural history is poorly characterised. We tested for genome-wide association for pulmonary arterial hypertension ... Full text Link to item Cite

Empowering genomic medicine by establishing critical sequencing result data flows: the eMERGE example.

Journal Article J Am Med Inform Assoc · October 1, 2018 The eMERGE Network is establishing methods for electronic transmittal of patient genetic test results from laboratories to healthcare providers across organizational boundaries. We surveyed the capabilities and needs of different network participants, esta ... Full text Link to item Cite

Leveraging electronic health records for clinical research.

Journal Article Am Heart J · August 2018 Electronic health records (EHRs) can be a major tool in the quest to decrease costs and timelines of clinical trial research, generate better evidence for clinical decision making, and advance health care. Over the past decade, EHRs have increasingly offer ... Full text Link to item Cite

Accuracy of the medication list in the electronic health record-implications for care, research, and improvement.

Journal Article J Am Med Inform Assoc · July 1, 2018 OBJECTIVE: Electronic medication lists may be useful in clinical decision support and research, but their accuracy is not well described. Our aim was to assess the completeness of the medication list compared to the clinical narrative in the electronic hea ... Full text Link to item Cite

Evaluating Foundational Data Quality in the National Patient-Centered Clinical Research Network (PCORnet®).

Journal Article EGEMS (Wash DC) · April 13, 2018 INTRODUCTION: Distributed research networks (DRNs) are critical components of the strategic roadmaps for the National Institutes of Health and the Food and Drug Administration as they work to move toward large-scale systems of evidence generation. The Nati ... Full text Link to item Cite

Implementation of a Regional Perinatal Data Repository from Clinical and Billing Records.

Journal Article Matern Child Health J · April 2018 Objectives To describe the implementation of the first phase of a regional perinatal data repository and to provide a roadmap for others to navigate technical, privacy, and data governance concerns in implementing similar resources. Methods Our implementat ... Full text Link to item Cite

Electronic medical records as a replacement for prospective research data collection in postoperative pain and opioid response studies.

Journal Article Int J Med Inform · March 2018 BACKGROUND AND AIM: Many clinical research studies claim to collect data that are also captured in the electronic medical record (EMR). We evaluate the potential for EMR data to replace prospective research data collection. METHODS: Using a dataset of 358 ... Full text Link to item Cite

Biases introduced by filtering electronic health records for patients with "complete data".

Journal Article J Am Med Inform Assoc · November 1, 2017 OBJECTIVE: One promise of nationwide adoption of electronic health records (EHRs) is the availability of data for large-scale clinical research studies. However, because the same patient could be treated at multiple health care institutions, data from only ... Full text Link to item Cite

A longitudinal analysis of data quality in a large pediatric data research network.

Journal Article J Am Med Inform Assoc · November 1, 2017 OBJECTIVE: PEDSnet is a clinical data research network (CDRN) that aggregates electronic health record data from multiple children's hospitals to enable large-scale research. Assessing data quality to ensure suitability for conducting research is a key req ... Full text Link to item Cite

Evaluation of identifier field agreement in linked neonatal records.

Journal Article J Perinatol · August 2017 OBJECTIVE: To better address barriers arising from missing and unreliable identifiers in neonatal medical records, we evaluated agreement and discordance among traditional and non-traditional linkage fields within a linked neonatal data set. STUDY DESIGN: ... Full text Link to item Cite

Reducing Parental Uncertainty Around Childhood Cancer: Implementation Decisions and Design Trade-Offs in Developing an Electronic Health Record-Linked Mobile App.

Journal Article JMIR Res Protoc · June 26, 2017 BACKGROUND: Parents of children newly diagnosed with cancer are confronted with multiple stressors that place them at risk for significant psychological distress. One strategy that has been shown to help reduce uncertainty is the provision of basic informa ... Full text Link to item Cite

The PCORnet Learning Cycle.

Conference AMIA · 2017 Cite

Epistatic Gene-Based Interaction Analyses for Glaucoma in eMERGE and NEIGHBOR Consortium.

Journal Article PLoS Genet · September 2016 Primary open angle glaucoma (POAG) is a complex disease and is one of the major leading causes of blindness worldwide. Genome-wide association studies have successfully identified several common variants associated with glaucoma; however, most of these var ... Full text Link to item Cite

Maternal metabolic risk factors for autism spectrum disorder-An analysis of electronic medical records and linked birth data.

Journal Article Autism Res · August 2016 Past studies have suggested that conditions experienced by women during pregnancy (e.g. obesity and gestational diabetes mellitus (GDM)) may be associated with having a child with autism spectrum disorder (ASD). Our objective was to compare mothers who had ... Full text Link to item Cite

Developing an Algorithm to Detect Early Childhood Obesity in Two Tertiary Pediatric Medical Centers.

Journal Article Appl Clin Inform · July 20, 2016 OBJECTIVE: The objective of this study is to develop an algorithm to accurately identify children with severe early onset childhood obesity (ages 1-5.99 years) using structured and unstructured data from the electronic health record (EHR). INTRODUCTION: Ch ... Full text Link to item Cite

Pediatric Eosinophilic Esophagitis Symptom Scores (PEESS v2.0) identify histologic and molecular correlates of the key clinical features of disease.

Journal Article J Allergy Clin Immunol · June 2015 BACKGROUND: The Pediatric Eosinophilic Esophagitis Symptom Score (PEESS v2.0) measures patient-relevant outcomes. However, whether patient-identified domains (dysphagia, gastroesophageal reflux disease [GERD], nausea/vomiting, and pain) align with clinical ... Full text Link to item Cite

A GWAS Study on Liver Function Test Using eMERGE Network Participants.

Journal Article PLoS One · 2015 INTRODUCTION: Liver enzyme levels and total serum bilirubin are under genetic control and in recent years genome-wide population-based association studies have identified different susceptibility loci for these traits. We conducted a genome-wide associatio ... Full text Link to item Cite

National Biologic Sample And Data Repository For Pah Update

Conference AMERICAN JOURNAL OF RESPIRATORY AND CRITICAL CARE MEDICINE · January 1, 2015 Link to item Cite

Practical considerations in genomic decision support: The eMERGE experience.

Journal Article J Pathol Inform · 2015 BACKGROUND: Genomic medicine has the potential to improve care by tailoring treatments to the individual. There is consensus in the literature that pharmacogenomics (PGx) may be an ideal starting point for real-world implementation, due to the presence of ... Full text Link to item Cite

A Digital Architecture for a Network-Based Learning Health System: Integrating Chronic Care Management, Quality Improvement, and Research.

Journal Article EGEMS (Wash DC) · 2015 INTRODUCTION: We collaborated with the ImproveCareNow Network to create a proof-of-concept architecture for a network-based Learning Health System. This collaboration involved transitioning an existing registry to one that is linked to the electronic healt ... Full text Link to item Cite

The levine experience in piloting electronic patient engagement tools in a pediatric specialty clinic setting

Journal Article Journal for Nurse Practitioners · November 1, 2014 Through Improve Care Now, a quality improvement and research collaborative for pediatric patients with inflammatory bowel disease, our clinic piloted the feasibility and acceptability of patient-facing electronic technology to enhance engagement. This arti ... Full text Cite

Preparing an annotated gold standard corpus to share with extramural investigators for de-identification research.

Journal Article J Biomed Inform · August 2014 OBJECTIVE: The current study aims to fill the gap in available healthcare de-identification resources by creating a new sharable dataset with realistic Protected Health Information (PHI) without reducing the value of the data for de-identification research ... Full text Link to item Cite

Effectiveness of anti-TNFα for Crohn disease: research in a pediatric learning health system.

Journal Article Pediatrics · July 2014 OBJECTIVES: ImproveCareNow (ICN) is the largest pediatric learning health system in the nation and started as a quality improvement collaborative. To test the feasibility and validity of using ICN data for clinical research, we evaluated the effectiveness ... Full text Link to item Cite

Increased prevalence of eosinophilic gastrointestinal disorders in pediatric PTEN hamartoma tumor syndromes.

Journal Article J Pediatr Gastroenterol Nutr · May 2014 OBJECTIVES: The PTEN hamartoma tumor syndromes (PHTSs) are a collection of disorders caused by germline mutations of the tumor suppressor gene PTEN. Eosinophilic gastrointestinal disorders (EGIDs) are rare diseases characterized by food-induced, eosinophil ... Full text Link to item Cite

Development of a web service for analysis in a distributed network.

Journal Article EGEMS (Wash DC) · 2014 OBJECTIVE: We describe functional specifications and practicalities in the software development process for a web service that allows the construction of the multivariate logistic regression model, Grid Logistic Regression (GLORE), by aggregating partial e ... Full text Open Access Link to item Cite

Phenome-wide association study (PheWAS) in EMR-linked pediatric cohorts, genetically links PLCL1 to speech language development and IL5-IL13 to Eosinophilic Esophagitis.

Journal Article Front Genet · 2014 OBJECTIVE: We report the first pediatric specific Phenome-Wide Association Study (PheWAS) using electronic medical records (EMRs). Given the early success of PheWAS in adult populations, we investigated the feasibility of this approach in pediatric cohorts ... Full text Link to item Cite

Applications of business analytics in healthcare

Journal Article Business Horizons · January 1, 2014 The American healthcare system is at a crossroads, and analytics, as an organizational skill, figures to play a pivotal role in its future. As more healthcare systems capture information electronically and begin to collect more novel forms of data, such as ... Full text Cite

Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS): architecture.

Journal Article J Am Med Inform Assoc · 2014 We describe the architecture of the Patient Centered Outcomes Research Institute (PCORI) funded Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS, http://www.SCILHS.org) clinical data research network, which leverages the $48 b ... Full text Link to item Cite

PEDSnet: a National Pediatric Learning Health System.

Journal Article J Am Med Inform Assoc · 2014 A learning health system (LHS) integrates research done in routine care settings, structured data capture during every encounter, and quality improvement processes to rapidly implement advances in new knowledge, all with active and meaningful patient parti ... Full text Link to item Cite

National Biological Sample And Data Repository For Pulmonary Arterial Hypertension

Conference AMERICAN JOURNAL OF RESPIRATORY AND CRITICAL CARE MEDICINE · January 1, 2014 Link to item Cite

Brief communication: PEDSnet: a National Pediatric Learning Health System.

Journal Article J. Am. Medical Informatics Assoc. · 2014 Full text Cite

Clinical genomics in the world of the electronic health record.

Journal Article Genet Med · October 2013 The widespread adoption of electronic health records presents a number of benefits to the field of clinical genomics. They include the ability to return results to the practitioner, to use genetic findings in clinical decision support, and to have data col ... Full text Link to item Cite

High prevalence of eosinophilic esophagitis in patients with inherited connective tissue disorders.

Journal Article J Allergy Clin Immunol · August 2013 BACKGROUND: Eosinophilic esophagitis (EoE) is an emerging chronic inflammatory disease mediated by immune hypersensitization to multiple foods and strongly associated with atopy and esophageal remodeling. OBJECTIVE: We provide clinical and molecular eviden ... Full text Link to item Cite

PedsQL eosinophilic esophagitis module: feasibility, reliability, and validity.

Journal Article J Pediatr Gastroenterol Nutr · July 2013 OBJECTIVE: Eosinophilic esophagitis (EoE) is a chronic esophageal inflammatory condition with a paucity of information on health-related quality of life (HRQOL). The objective of the study was to report on the measurement properties of the PedsQL EoE Modul ... Full text Link to item Cite

Development of heart and respiratory rate percentile curves for hospitalized children.

Journal Article Pediatrics · April 2013 OBJECTIVE: To develop and validate heart and respiratory rate percentile curves for hospitalized children and compare their vital sign distributions to textbook reference ranges and pediatric early warning score (EWS) parameters. METHODS: For this cross-se ... Full text Link to item Cite

EMR-linked GWAS study: investigation of variation landscape of loci for body mass index in children.

Journal Article Front Genet · 2013 UNLABELLED: Common variations at the loci harboring the fat mass and obesity gene (FTO), MC4R, and TMEM18 are consistently reported as being associated with obesity and body mass index (BMI) especially in adult population. In order to confirm this effect i ... Full text Link to item Cite

Informatics and operations--let's get integrated.

Journal Article J Am Med Inform Assoc · January 1, 2013 The widespread adoption of commercial electronic health records (EHRs) presents a significant challenge to the field of informatics. In their current form, EHRs function as a walled garden and prevent the integration of outside tools and services. This imp ... Full text Link to item Cite

Large-scale evaluation of automated clinical note de-identification and its impact on information extraction.

Journal Article J Am Med Inform Assoc · January 1, 2013 OBJECTIVE: (1) To evaluate a state-of-the-art natural language processing (NLP)-based approach to automatically de-identify a large set of diverse clinical notes. (2) To measure the impact of de-identification on the performance of information extraction a ... Full text Link to item Cite

National Biological Sample And Data Repository For Who Group 1 Pulmonary Arterial Hypertension

Conference AMERICAN JOURNAL OF RESPIRATORY AND CRITICAL CARE MEDICINE · January 1, 2013 Link to item Cite

Next-generation registries: fusion of data for care, and research.

Journal Article AMIA Jt Summits Transl Sci Proc · 2013 Disease-based registries are a critical tool for electronic data capture of high-quality, gold standard data for clinical research as well as for population management in clinical care. Yet, a legacy of significant operational costs, resource requirements, ... Link to item Cite

In Search of a Data-in-Once, Electronic Health Record-Linked, Multicenter Registry-How Far We Have Come and How Far We Still Have to Go.

Journal Article EGEMS (Wash DC) · 2013 The learning health system is a framework in which new knowledge is translated into general clinical practice and clinical practice serves as the engine to generate new evidence and knowledge. One type of learning health system is an electronic health reco ... Full text Link to item Cite

An i2b2-based, generalizable, open source, self-scaling chronic disease registry.

Journal Article J Am Med Inform Assoc · January 1, 2013 OBJECTIVE: Registries are a well-established mechanism for obtaining high quality, disease-specific data, but are often highly project-specific in their design, implementation, and policies for data use. In contrast to the conventional model of centralized ... Full text Link to item Cite

Approaches to facilitate institutional review board approval of multicenter research studies.

Journal Article Med Care · July 2012 BACKGROUND AND OBJECTIVES: Gaining Institutional Review Board (IRB) approval for a multicenter research study can be a lengthy and time-consuming process. It can increase the complexity of consent forms, decreasing patient understanding and lowering recrui ... Full text Link to item Cite

System for integrated adherence monitoring: real-time non-adherence risk assessment in pediatric kidney transplantation.

Journal Article Pediatr Transplant · June 2012 This study reports initial results of the development of the SIAM, a non-adherence risk assessment system for tacrolimus and sirolimus for the pediatric kidney transplant population. Forty-eight youths between 10 and 25 yr of age diagnosed with chronic kid ... Full text Link to item Cite

Building gold standard corpora for medical natural language processing tasks.

Journal Article AMIA Annu Symp Proc · 2012 We present the construction of three annotated corpora to serve as gold standards for medical natural language processing (NLP) tasks. Clinical notes from the medical record, clinical trial announcements, and FDA drug labels are annotated. We report high i ... Link to item Cite

Challenges in creating an opt-in biobank with a registrar-based consent process and a commercial EHR.

Journal Article J Am Med Inform Assoc · 2012 Residual clinical samples represent a very appealing source of biomaterial for translational and clinical research. We describe the implementation of an opt-in biobank, with consent being obtained at the time of registration and the decision stored in our ... Full text Link to item Cite

Adherence to the HPV vaccine dosing intervals and factors associated with completion of 3 doses.

Journal Article Pediatrics · January 2011 OBJECTIVE: The objectives of this study were to determine (1) adherence to the immunization schedule for the human papillomavirus quadrivalent vaccine and (2) factors associated with completion of the 3-dose series. METHODS: This was a retrospective review ... Full text Link to item Cite

Culture of non-genital sites increases the detection of gonorrhea in women.

Journal Article J Pediatr Adolesc Gynecol · August 2010 STUDY OBJECTIVES: Although gonorrhea may infect the cervix, rectum, or pharynx of women, culturing non-cervical sites is rare outside of sexually transmitted disease (STD) clinics. This study aims to compare rectal and pharyngeal gonorrhea prevalence in ad ... Full text Link to item Cite

On the use of structure and sequence-based features for protein classification and retrieval

Journal Article Knowledge and Information Systems · January 1, 2008 The need to retrieve or classify proteins using structure or sequence-based similarity underlies many biomedical applications. In drug discovery, researchers search for proteins that share specific chemical properties as sources for new treatment. With fol ... Full text Cite

Adaptive postprocessing techniques for myocardial tissue tracking with displacement-encoded MR imaging.

Journal Article Radiology · January 2008 UNLABELLED: The purpose of this study was to prospectively assess the effects of two adaptive postprocessing techniques on the evaluation of myocardial function with displacement-encoded magnetic resonance (MR) imaging, including sensitivity for abnormal w ... Full text Link to item Cite

Spatial modeling and classification of corneal shape.

Journal Article IEEE Trans Inf Technol Biomed · March 2007 One of the most promising applications of data mining is in biomedical data used in patient diagnosis. Any method of data analysis intended to support the clinical decision-making process should meet several criteria: it should capture clinically relevant ... Full text Link to item Cite

Ensernble-learning by model-based spatial averaging

Conference PREDICTION AND DISCOVERY · January 1, 2007 Link to item Cite

On the use of structure and sequence-based features for protein classification and retrieval

Conference Proceedings - IEEE International Conference on Data Mining, ICDM · December 1, 2006 The need to retrieve or classify protein molecules using structure or sequence-based similarity measures underlies a wide range of biomedical applications. In drug discovery, researchers search for proteins that share specific chemical properties as possib ... Full text Cite

Structure-based querying of proteins using wavelets

Conference International Conference on Information and Knowledge Management, Proceedings · December 1, 2006 The ability to retrieve molecules based on structural similarity has use in many applications, from disease diagnosis and treatment to drug discovery and design. In this paper, we present a method to represent protein molecules that allows for the fast, fl ... Full text Cite

Protein classification using summaries of profile-based frequency matrices

Conference Proceedings of the ACM SIGKDD International Conference on Knowledge Discovery and Data Mining · January 1, 2006 The ability to detect or predict the structural class of a protein based on its primary sequence has been a major objective for researchers working in bioinformatics. Within the bioinformatics community, the prevailing belief seems to be that support vecto ... Cite

Alternate representation of distance matrices for characterization of protein structure

Conference Proceedings - IEEE International Conference on Data Mining, ICDM · December 1, 2005 The most suitable method for the automated classification of protein structures remains an open problem in computational biology. In order to classify a protein structure with any accuracy, an effective representation must be chosen. Here we present two me ... Full text Cite

A multi-level approach to SCOP fold recognition

Conference Proceedings - BIBE 2005: 5th IEEE Symposium on Bioinformatics and Bioengineering · December 1, 2005 The classification of proteins based on their structure can play an important role in the deduction or discovery of protein function. However, the relatively low number of solved protein structures and the unknown relationship between structure and sequenc ... Full text Cite

Classification of biomedical data through model-based spatial averaging

Conference Proceedings - BIBE 2005: 5th IEEE Symposium on Bioinformatics and Bioengineering · December 1, 2005 Ensemble learning is frequently used to reduce classification error. The more popular techniques draw multiple samples from the training data and employ a voting procedure to aggregate the decisions of the classifiers constructed from those samples. In pra ... Full text Cite

A model-based approach to visualizing classification decisions for patient diagnosis

Conference Lecture Notes in Computer Science (including subseries Lecture Notes in Artificial Intelligence and Lecture Notes in Bioinformatics) · January 1, 2005 Automated classification systems are often used for patient diagnosis. In many cases, the rationale behind a decision is as important as the decision itself. Here we detail a method of visualizing the criteria used by a decision tree classifier to provide ... Full text Cite