Explanipedia

“Those boxes do not hold me”: Using Narrative Health Experiences Research to Learn from Patients and Care Partners Beyond Surveys Open

Rachel Grob, Barbara Warren, Erika Cottrell, Njeri Grevious, Sara J. Knight , et al. · 2025

Associations between local COVID-19 policies and anxiety in the USA: a longitudinal digital cohort study Open

Aaron E. Cozen, Rita Hamad, Soo Park, Gregory M. Marcus, Jeffrey E. Olgin , et al. · 2025

Introduction A lack of coordinated federal guidance led to substantial heterogeneity in local COVID-19 policies across US states and counties. Local government policies may have contributed to increases in anxiety and mental health dispari…

Measuring perceived utility of genomic sequencing: Development and validation of the GENEtic Utility (GENE-U) scale for pediatric diagnostic testing Open

Hadley Stevens Smith, Caryn Kseniya Rubanovich, Jill O. Robinson, Ariel Levchenko, Sarah A Classen , et al. · 2024

Measuring health-related quality of life in children with suspected genetic conditions: validation of the PedsQL proxy-report versions Open

Hadley Stevens Smith, Michael C. Leo, Katrina A.B. Goddard, Kristin R. Muessig, Frank Angelo , et al. · 2024

Self-Reported Everyday Functioning After COVID-19 Infection Open

Theodore J. Iwashyna, Valerie A. Smith, Sarah Seelye, Amy S. B. Bohnert, Edward J. Boyko , et al. · 2024

Importance Changes in everyday functioning are crucial to assessing the long-term impact of COVID-19 infection. Objective To examine the impact of COVID-19 infection on everyday functioning 18 months after infection among veterans with and…

Changes in Outpatient Health Care Use After COVID-19 Infection Among Veterans Open

Paul L. Hebert, Kyle Kumbier, Valerie A. Smith, Denise M. Hynes, Diana J. Govier , et al. · 2024

Importance The association of COVID-19 infection with outpatient care utilization is unclear. Many studies reported population surveillance studies rather than comparing outpatient health care use between COVID-19–infected and uninfected c…

Late Mortality After COVID-19 Infection Among US Veterans vs Risk-Matched Comparators Open

Theodore J. Iwashyna, Sarah Seelye, Theodore S. Z. Berkowitz, John Pura, Amy S. B. Bohnert , et al. · 2023

Importance Despite growing evidence of persistent problems after acute COVID-19, how long the excess mortality risk associated with COVID-19 persists is unknown. Objective To measure the time course of differential mortality among Veterans…

Parents’ Perspectives on Secondary Genetic Ancestry Findings in Pediatric Genomic Medicine Open

Jaimie L. Richards, Sara J. Knight · 2023

Reassessing surgical guidelines for papillary thyroid cancer impact on survival: Expanding indications for lobectomy Open

Audrey Stevens, Jennie Meier, Archana Bhat, Sara J. Knight, David J. Vanness , et al. · 2023

Parents’ Perspectives on the Utility of Genomic Sequencing in the Neonatal Intensive Care Unit Open

Amy A. Lemke, Michelle L. Thompson, Emily C. Gimpel, Katelyn C. McNamara, Carla A. Rich , et al. · 2023

Background: It is critical to understand the wide-ranging clinical and non-clinical effects of genome sequencing (GS) for parents in the NICU context. We assessed parents’ experiences with GS as a first-line diagnostic tool for infants wit…

Factors Associated With Long COVID Symptoms in an Online Cohort Study Open

Matthew S. Durstenfeld, Michael J. Peluso, Noah D. Peyser, Feng Lin, Sara J. Knight , et al. · 2023

Background Few prospective studies of Long COVID risk factors have been conducted. The purpose of this study was to determine whether sociodemographic factors, lifestyle, or medical history preceding COVID-19 or characteristics of acute se…

Unreported SARS-CoV-2 Home Testing and Test Positivity Open

Soo Park, Gregory M. Marcus, Jeffrey E. Olgin, Thomas W. Carton, Rita Hamad , et al. · 2023

This cohort study examines time trends in officially reported SARS-CoV-2 case counts and unreported home test positivity.

Conducting clinical genomics research during the COVID-19 pandemic: Lessons learned from the CSER consortium experience Open

Stephanie A. Kraft, Heidi V. Russell, Jeannette T. Bensen, Katherine E. Bonini, Jill O. Robinson , et al. · 2023

Clinical research studies have navigated many changes throughout the COVID-19 pandemic. We sought to describe the pandemic′s impact on research operations in the context of a clinical genomics research consortium that aimed to enroll a maj…

O58: Measuring perceived utility of genomic sequencing in children and adults: Instrument development and validation* Open

Hadley Stevens Smith, Jill Robinson, Caryn Rubanovich, Ariel Levchenko, Janet Malek , et al. · 2023

Factors Associated with Long Covid Symptoms in an Online Cohort Study Open

Matthew S. Durstenfeld, Michael J. Peluso, Noah D. Peyser, Feng Lin, Sara J. Knight , et al. · 2022

Importance Prolonged symptoms following SARS-CoV-2 infection, or Long COVID, is common, but few prospective studies of Long COVID risk factors have been conducted. Objective To determine whether sociodemographic factors, lifestyle, or medi…

Conducting clinical genomics research during the <span>COVID</span>‐19 pandemic: Lessons learned from the <span>CSER</span> consortium experience Open

Stephanie A. Kraft, Heidi V. Russell, Jeannette T. Bensen, Katherine E. Bonini, Jill O. Robinson , et al. · 2022

Clinical research studies have navigated many changes throughout the COVID‐19 pandemic. We sought to describe the pandemic′s impact on research operations in the context of a clinical genomics research consortium that aimed to enroll a maj…

The U.S. COVID-19 County Policy Database: a novel resource to support pandemic-related research Open

Rita Hamad, Kristin Lyman, Feng Lin, Madelaine Faulkner Modrow, Pelin Ozluk , et al. · 2022

Background It is increasingly recognized that policies have played a role in both alleviating and exacerbating the health and economic consequences of the COVID-19 pandemic. There has been limited systematic evaluation of variation in U.S.…

Women of the Gulf War: Understanding Their Military and Health Experiences Over 30 Years Open

Megan Lafferty, Kara Winchell, Erika Cottrell, Sara J. Knight, Shannon M. Nugent · 2022

Introduction Women Veterans of the Persian Gulf War (GW) expanded the military roles they had filled in previous military eras, with some women engaging in direct combat for the first time. Many GW service members, including women, had uni…

Patients undergoing colorectal surgery at a Veterans Affairs Hospital do not experience racial disparity in length of stay either before or after implementing an enhanced recovery pathway Open

Courtney Rentas, Samantha Baker, Lauren Goss, Joshua Richman, Sara J. Knight , et al. · 2022

Background Enhanced Recovery Pathways (ERP) have been shown to reduce racial disparities following surgery. The objective of this study is to determine whether ERP implementation mitigates racial disparities at a Veterans Affairs Hospital.…

Health Experiences Research as a Resource and Mechanism for Veteran Engagement in VA Healthcare Research and Care Delivery Open

Shannon M. Nugent, Erika Cottrell, Sara J. Knight, Mark Helfand · 2022

Veteran Engagement in Health Services Research: a Conceptual Model Open

Sara J. Knight, Jeffrey P. Haibach, Alison Brown, Jeff Whittle, Sarah Ono , et al. · 2022

eP425: Parental impact of genome sequencing during the neonatal period Open

Kyle B. Brothers, Carla A. Rich, Emily C. Gimpel, Kelly M. East, J. Nicholas Cochran , et al. · 2022

Integration of stakeholder engagement from development to dissemination in genomic medicine research: Approaches and outcomes from the CSER Consortium Open

Julianne O’Daniel, Sara Ackerman, Lauren Desrosiers, Shannon Rego, Sara J. Knight , et al. · 2022

Genome sequencing as a first-line diagnostic test for hospitalized infants Open

Kevin M. Bowling, Michelle L. Thompson, Candice R. Finnila, Susan M. Hiatt, Donald R. Latner , et al. · 2021

Conceptualization of utility in translational clinical genomics research Open

Hadley Stevens Smith, Kyle B. Brothers, Sara J. Knight, Sara Ackerman, Christine Rini , et al. · 2021

Perceived Utility of Genomic Sequencing: Qualitative Analysis and Synthesis of a Conceptual Model to Inform Patient-Centered Instrument Development Open

Hadley Stevens Smith, Stephanie R. Morain, Jill O. Robinson, Isabel Canfield, Janet Malek , et al. · 2021

Risk of Suicidal Self-directed Violence Among US Veteran Survivors of Head and Neck Cancer Open

Shannon M. Nugent, Benjamin J. Morasco, Robert Handley, Daniel Clayburgh, Elizabeth R. Hooker , et al. · 2021

In this cohort study, a high proportion of HNC survivors with an SSVD event died from their injuries. Identification of risk factors for SSDV among HNC survivors may help direct additional resources to those who are at high risk. Referral …

Genome sequencing as a first-line diagnostic test for hospitalized newborns Open

Kevin M. Bowling, Michelle L. Thompson, Candice R. Finnila, Susan M. Hiatt, Donald R. Latner , et al. · 2021

Purpose SouthSeq, a translational research study to perform genome sequencing (GS) for infants with symptoms suggestive of a genetic disorder, was conducted in NICUs in the Southeastern US. Recruitment targeted racial/ethnic minorities and…

Head to head randomized trial of two decision aids for prostate cancer Open

Angela Fagerlin, Margaret Holmes‐Rovner, Timothy P. Hofer, David R. Rovner, Stewart C. Alexander , et al. · 2021

Examining access to care in clinical genomic research and medicine: Experiences from the CSER Consortium Open

Amanda M. Gutierrez, Jill O. Robinson, Simon Outram, Hadley Stevens Smith, Stephanie A. Kraft , et al. · 2021

Introduction: Ensuring equitable access to health care is a widely agreed-upon goal in medicine, yet access to care is a multidimensional concept that is difficult to measure. Although frameworks exist to evaluate access to care generally,…

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