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Full-Text Articles in Medicine and Health Sciences

A Pilot Intervention Combining Assessment And Feedback With Communication Training And Behavioral Nudges To Increase Hpv Vaccine Uptake., Andrea Bradley-Ewing, Brian R. Lee, Jason N. Doctor, Georgann Meredith, Kathy Goggin, Angela Myers Dec 2022

A Pilot Intervention Combining Assessment And Feedback With Communication Training And Behavioral Nudges To Increase Hpv Vaccine Uptake., Andrea Bradley-Ewing, Brian R. Lee, Jason N. Doctor, Georgann Meredith, Kathy Goggin, Angela Myers

Manuscripts, Articles, Book Chapters and Other Papers

Human papillomavirus (HPV) causes >40,000 cancer diagnoses each year, yet vaccination rates remain low because widespread implementation of strategies to increase vaccinations has not occurred. Behavioral nudges have demonstrated efficacy in improving uptake of desired behaviors in health care settings but have not been tested for increasing HPV vaccinations. We assessed the impact of an intervention combining behavioral nudges with other proven strategies (i.e., assessment and feedback, provider communication training) on HPV vaccination rates and parental satisfaction in four Midwestern pediatric, outpatient practices. Practices were randomly assigned to receive either assessment and feedback or assessment and feedback combined ...


A Step-By-Step Guide For Mentors To Facilitate Team Building And Communication In Virtual Teams., Julia F. Aquino, Robert Riss, Sara M. Multerer, Leora N. Mogilner, Teri L. Turner Dec 2022

A Step-By-Step Guide For Mentors To Facilitate Team Building And Communication In Virtual Teams., Julia F. Aquino, Robert Riss, Sara M. Multerer, Leora N. Mogilner, Teri L. Turner

Manuscripts, Articles, Book Chapters and Other Papers

As collaborative work in medical education has increasingly moved online, team mentors have had to adapt their practices into the virtual environment. Fostering connection, communication and productivity on virtual teams requires specific skills and deliberate practice that differ from in-person teamwork. Drawing from best practices in business, education and medicine and also from our own experience as a virtual team, we present a guide for mentors to create and sustain successful virtual teams. Grounded in Tuckman's Five Stage Model of Team Development, we offer specific strategies for virtual team mentors to promote team cohesion, mitigate conflict, maintain productivity and ...


Safety And Efficacy Of Voxelotor In Pediatric Patients With Sickle Cell Disease Aged 4 To 11 Years., Jeremie H. Estepp, Ram Kalpatthi, Gerald Woods, Sara Trompeter, Robert I. Liem, Kacie Sims, Adlette Inati, Baba P D Inusa, Andrew Campbell, Connie Piccone, Miguel R. Abboud, Kim Smith-Whitley, Sandra Dixon, Margaret Tonda, Carla Washington, Noelle M. Griffin, Clark Brown Aug 2022

Safety And Efficacy Of Voxelotor In Pediatric Patients With Sickle Cell Disease Aged 4 To 11 Years., Jeremie H. Estepp, Ram Kalpatthi, Gerald Woods, Sara Trompeter, Robert I. Liem, Kacie Sims, Adlette Inati, Baba P D Inusa, Andrew Campbell, Connie Piccone, Miguel R. Abboud, Kim Smith-Whitley, Sandra Dixon, Margaret Tonda, Carla Washington, Noelle M. Griffin, Clark Brown

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Sickle cell disease (SCD) is a devastating, multisystemic disorder that affects millions of people worldwide. The earliest clinical manifestations of SCD can affect infants as young as 6 months of age, and pediatric patients are at risk for acute and life-threatening complications. Early intervention with treatments that target the underlying pathophysiological mechanism of SCD, sickle hemoglobin (HbS) polymerization, are expected to slow disease progression and circumvent disease-associated morbidity and mortality.

PROCEDURE: The HOPE-KIDS 1 trial (NCT02850406) is an ongoing four-part, phase 2a, open-label, single- and multiple-dose study to evaluate the pharmacokinetics, efficacy, and safety of voxelotor-a first-in-class HbS polymerization ...


Real-World Use Of Tisagenlecleucel In Infant Acute Lymphoblastic Leukemia., Amy Moskop, Lauren Pommert, Christina Baggott, Snehit Prabhu, Holly L. Pacenta, Christine L. Phillips, Jenna Rossoff, Heather E. Stefanski, Julie-An Talano, Steve P. Margossian, Michael R. Verneris, Douglas Myers, Nicole A. Karras, Patrick A. Brown, Muna Qayed, Michelle L. Hermiston, Prakash Satwani, Christa Krupski, Amy K. Keating, Rachel Wilcox, Cara A. Rabik, Vanessa A. Fabrizio, Vasant Chinnabhandar, A Yasemin Goksenin, Kevin J. Curran, Crystal L. Mackall, Theodore W. Laetsch, Erin M. Guest, Erin H. Breese, Liora M. Schultz Jul 2022

Real-World Use Of Tisagenlecleucel In Infant Acute Lymphoblastic Leukemia., Amy Moskop, Lauren Pommert, Christina Baggott, Snehit Prabhu, Holly L. Pacenta, Christine L. Phillips, Jenna Rossoff, Heather E. Stefanski, Julie-An Talano, Steve P. Margossian, Michael R. Verneris, Douglas Myers, Nicole A. Karras, Patrick A. Brown, Muna Qayed, Michelle L. Hermiston, Prakash Satwani, Christa Krupski, Amy K. Keating, Rachel Wilcox, Cara A. Rabik, Vanessa A. Fabrizio, Vasant Chinnabhandar, A Yasemin Goksenin, Kevin J. Curran, Crystal L. Mackall, Theodore W. Laetsch, Erin M. Guest, Erin H. Breese, Liora M. Schultz

Manuscripts, Articles, Book Chapters and Other Papers

Infants with B-cell acute lymphoblastic leukemia (B-ALL) have poor outcomes because of chemotherapy resistance leading to high relapse rates. Tisagenlecleucel, a CD19-directed chimeric antigen receptor T-cell (CART) therapy, is US Food and Drug Administration approved for relapsed or refractory B-ALL in patients ≤25 years; however, the safety and efficacy of this therapy in young patients is largely unknown because children(n = 14). Sixty-four percent of patients (n = 9) achieved minimal residual disease-negative remission after CART and 50% of patients remain in remission at last follow-up. All patients with high disease burden at time of CART infusion (>M1 marrow) were refractory ...


Integrated Persevere And Endothelial Biomarker Risk Model Predicts Death And Persistent Mods In Pediatric Septic Shock: A Secondary Analysis Of A Prospective Observational Study., Mihir R. Atreya, Natalie Z. Cvijanovich, Julie C. Fitzgerald, Scott L. Weiss, Michael T. Bigham, Parag N. Jain, Adam J. Schwarz, Riad Lutfi, Jeffrey Nowak, Geoffrey L. Allen, Neal J. Thomas, Jocelyn R. Grunwell, Torrey Baines, Michael Quasney, Bereketeab Haileselassie, Christopher J. Lindsell, Matthew N. Alder, Hector R. Wong Jul 2022

Integrated Persevere And Endothelial Biomarker Risk Model Predicts Death And Persistent Mods In Pediatric Septic Shock: A Secondary Analysis Of A Prospective Observational Study., Mihir R. Atreya, Natalie Z. Cvijanovich, Julie C. Fitzgerald, Scott L. Weiss, Michael T. Bigham, Parag N. Jain, Adam J. Schwarz, Riad Lutfi, Jeffrey Nowak, Geoffrey L. Allen, Neal J. Thomas, Jocelyn R. Grunwell, Torrey Baines, Michael Quasney, Bereketeab Haileselassie, Christopher J. Lindsell, Matthew N. Alder, Hector R. Wong

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Multiple organ dysfunction syndrome (MODS) is a critical driver of sepsis morbidity and mortality in children. Early identification of those at risk of death and persistent organ dysfunctions is necessary to enrich patients for future trials of sepsis therapeutics. Here, we sought to integrate endothelial and PERSEVERE biomarkers to estimate the composite risk of death or organ dysfunctions on day 7 of septic shock.

METHODS: We measured endothelial dysfunction markers from day 1 serum among those with existing PERSEVERE data. TreeNet® classification model was derived incorporating 22 clinical and biological variables to estimate risk. Based on relative variable importance ...


Challenges Of Diagnosing Pseudohypoaldosteronism (Pha) In An Infant., Ghufran Babar, Minah Tariq Jul 2022

Challenges Of Diagnosing Pseudohypoaldosteronism (Pha) In An Infant., Ghufran Babar, Minah Tariq

Manuscripts, Articles, Book Chapters and Other Papers

Background. Pseudohypoaldosteronism (PHA) is characterized by renal tubular resistance to aldosterone. As a result, the symptoms typically involve hyperkalemia and hyponatremia. The aim of this clinical case report is to highlight the severe electrolyte imbalance PHA can present within an infant, as well as difficulties in diagnosing the condition. Case Presentation. A 5-week-old male arrived at the ER with episodes of emesis, lethargy, and difficulty in feeding. He had significant electrolyte abnormalities and was being treated by his PCP for failure to thrive. He presented with urinary sodium wasting, indicated by hyponatremia, hyperkalemia, low chloride, and hypercalcemia. Patient was treated ...


Validation Of Remote Height And Weight Assessment In A Rural Randomized Clinical Trial., Bethany Forseth Hanson, Ann M. Davis, Dana Bakula, Megan Murray, Kelsey Dean, Rebecca E. Swinburne Romine, Kandace Fleming Jul 2022

Validation Of Remote Height And Weight Assessment In A Rural Randomized Clinical Trial., Bethany Forseth Hanson, Ann M. Davis, Dana Bakula, Megan Murray, Kelsey Dean, Rebecca E. Swinburne Romine, Kandace Fleming

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: The purpose of this study is to describe and assess a remote height and weight protocol that was developed for an ongoing trial conducted during the SARS COV-2 pandemic.

METHODS: Thirty-eight rural families (children 8.3 ± 0.7 years; 68% female; and caregivers 38.2 ± 6.1 years) were provided detailed instructions on how to measure height and weight. Families obtained measures via remote data collection (caregiver weight, child height and weight) and also by trained staff. Differences between data collection methods were examined.

RESULTS: Per absolute mean difference analyses, slightly larger differences were found for child weight (0 ...


Characterization Of The Mucosally-Adherent Duodenal Microbiome In Children With And Without Crohn's Disease., Kenneth Schmidt, Janelle R. Noel-Macdonnell Phd, Carrie Vyhlidal, Daniel P. Heruth, Vivekanand Singh, Atif A. Ahmed, Taina Hudson, Veronica Williams, Valentina Shakhnovich Jul 2022

Characterization Of The Mucosally-Adherent Duodenal Microbiome In Children With And Without Crohn's Disease., Kenneth Schmidt, Janelle R. Noel-Macdonnell Phd, Carrie Vyhlidal, Daniel P. Heruth, Vivekanand Singh, Atif A. Ahmed, Taina Hudson, Veronica Williams, Valentina Shakhnovich

Manuscripts, Articles, Book Chapters and Other Papers

Manipulation of the microbiome is a rational treatment strategy for inflammatory bowel disease (IBD). Compared to the colon and terminal ileum (TI), understanding of the microbial composition in the duodenum is sparse. This gap in knowledge is especially significant for children with Crohn's disease (CD) because the prevalence of duodenal CD is higher in children than in adults. Our aim was to characterize the bacterial composition of the mucosally-adherent duodenal microbiome in children with and without CD as a first step toward development of targeted IBD treatment strategies at this disease location. Fresh-frozen mucosal biopsies were obtained from the ...


Insurance Coverage And Respiratory Morbidities In Bronchopulmonary Dysplasia., Joseph M. Collaco, Michael C. Tracy, Catherine A. Sheils, Jessica L. Rice, Lawrence M. Rhein, Leif D. Nelin, Paul E. Moore, Winston M. Manimtim, Jonathan C. Levin, Khanh Lai, Lystra P. Hayden, Julie L. Fierro, Eric D. Austin, Stamatia Alexiou, Amit Agarwal, Natalie Villafranco, Roopa Siddaiah, Antonia P. Popova, Ioana A. Cristea, Christopher D. Baker, Manvi Bansal, Sharon A. Mcgrath-Morrow Jul 2022

Insurance Coverage And Respiratory Morbidities In Bronchopulmonary Dysplasia., Joseph M. Collaco, Michael C. Tracy, Catherine A. Sheils, Jessica L. Rice, Lawrence M. Rhein, Leif D. Nelin, Paul E. Moore, Winston M. Manimtim, Jonathan C. Levin, Khanh Lai, Lystra P. Hayden, Julie L. Fierro, Eric D. Austin, Stamatia Alexiou, Amit Agarwal, Natalie Villafranco, Roopa Siddaiah, Antonia P. Popova, Ioana A. Cristea, Christopher D. Baker, Manvi Bansal, Sharon A. Mcgrath-Morrow

Manuscripts, Articles, Book Chapters and Other Papers

INTRODUCTION: Preterm infants and young children with bronchopulmonary dysplasia (BPD) are at increased risk for acute care utilization and chronic respiratory symptoms during early life. Identifying risk factors for respiratory morbidities in the outpatient setting could decrease the burden of care. We hypothesized that public insurance coverage was associated with higher acute care usage and respiratory symptoms in preterm infants and children with BPD after initial neonatal intensive care unit (NICU) discharge.

METHODS: Subjects were recruited from BPD clinics at 10 tertiary care centers in the United States between 2018 and 2021. Demographics and clinical characteristics were obtained through chart ...


Analysis Of Neonatal Neurobehavior And Developmental Outcomes Among Preterm Infants., Elisabeth C. Mcgowan, Julie A. Hofheimer, T Michael O'Shea, Howard Kilbride, Brian S. Carter, Jennifer Check, Jennifer Helderman, Charles R. Neal, Steve Pastyrnak, Lynne M. Smith, Marie Camerota, Lynne M. Dansereau, Sheri A. Della Grotta, Barry M. Lester Jul 2022

Analysis Of Neonatal Neurobehavior And Developmental Outcomes Among Preterm Infants., Elisabeth C. Mcgowan, Julie A. Hofheimer, T Michael O'Shea, Howard Kilbride, Brian S. Carter, Jennifer Check, Jennifer Helderman, Charles R. Neal, Steve Pastyrnak, Lynne M. Smith, Marie Camerota, Lynne M. Dansereau, Sheri A. Della Grotta, Barry M. Lester

Manuscripts, Articles, Book Chapters and Other Papers

Importance: The ability to identify poor outcomes and treatable risk factors among very preterm infants remains challenging; improving early risk detection and intervention targets to potentially address developmental and behavioral delays is needed.

Objective: To determine associations between neonatal neurobehavior using the Neonatal Intensive Care Unit (NICU) Network Neurobehavioral Scale (NNNS), neonatal medical risk, and 2-year outcomes.

Design, Setting, and Participants: This multicenter cohort enrolled infants born at less than 30 weeks' gestation at 9 US university-affiliated NICUs. Enrollment was conducted from April 2014 to June 2016 with 2-year adjusted age follow-up assessment. Data were analyzed from December 2019 to ...


Randomized Clinical Trial Of A Self-Care And Communication Intervention For Parents Of Adolescent/Young Adults Undergoing High-Risk Cancer Treatment: A Report From The Children's Oncology Group., Joan E. Haase, Kristin Stegenga, Sheri L. Robb, Mary C. Hooke, Debra S. Burns, Patrick O. Monahan, Timothy E. Stump, Amanda K. Henley, Paul R. Haut, Brooke Cherven, Lona Roll, Anne-Marie Langevin, Rita H. Pickler, Karen Albritton, Deanna Hawkins, Erin Osterkamp, Pauline Mitby, Jackie Smith, Virginia R. Diaz, Erica Garcia-Frausto, Margo Moore Jul 2022

Randomized Clinical Trial Of A Self-Care And Communication Intervention For Parents Of Adolescent/Young Adults Undergoing High-Risk Cancer Treatment: A Report From The Children's Oncology Group., Joan E. Haase, Kristin Stegenga, Sheri L. Robb, Mary C. Hooke, Debra S. Burns, Patrick O. Monahan, Timothy E. Stump, Amanda K. Henley, Paul R. Haut, Brooke Cherven, Lona Roll, Anne-Marie Langevin, Rita H. Pickler, Karen Albritton, Deanna Hawkins, Erin Osterkamp, Pauline Mitby, Jackie Smith, Virginia R. Diaz, Erica Garcia-Frausto, Margo Moore

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Parents of adolescents and young adults (AYAs) with cancer offer primary support to their children and often experience their own high levels of distress, affecting parent-AYA communication and quality of life.

OBJECTIVE: To reduce parent distress and improve communication during high-risk cancer treatment, we examined efficacy of a self-care and communication intervention for parents and indirect benefit for AYAs receiving a therapeutic music video (TMV) intervention.

METHODS: In this study, we conducted a multisite, randomized controlled trial with AYAs and parents enrolled as dyads (n = 110). Parents were randomized to intervention or low-dose control; all AYAs received TMV. Data ...


Psychosocial Considerations For The Child With Rare Disease: A Review With Recommendations And Calls To Action., Leslee Belzer, Margaret Wright, Emily J. Goodwin, Mehar N. Singh, Brian S. Carter Jun 2022

Psychosocial Considerations For The Child With Rare Disease: A Review With Recommendations And Calls To Action., Leslee Belzer, Margaret Wright, Emily J. Goodwin, Mehar N. Singh, Brian S. Carter

Manuscripts, Articles, Book Chapters and Other Papers

Rare diseases (RD) affect children, adolescents, and their families infrequently, but with a significant impact. The diagnostic odyssey undertaken as part of having a child with RD is immense and carries with it practical, emotional, relational, and contextual issues that are not well understood. Children with RD often have chronic and complex medical conditions requiring a complicated milieu of care by numerous clinical caregivers. They may feel isolated and may feel stigmas in settings of education, employment, and the workplace, or a lack a social support or understanding. Some parents report facing similar loneliness amidst a veritable medicalization of their ...


Associations Of Maternal Lipoprotein Particle Distribution In Mid-Pregnancy With Birth Outcomes: A Pilot Study., Todd C. Rideout, Xiaozhong Wen, Divya Choudhary, Marissa Catanzaro, Richard W. Browne, Vanessa M. Barnabei, Kai Ling Kong Jun 2022

Associations Of Maternal Lipoprotein Particle Distribution In Mid-Pregnancy With Birth Outcomes: A Pilot Study., Todd C. Rideout, Xiaozhong Wen, Divya Choudhary, Marissa Catanzaro, Richard W. Browne, Vanessa M. Barnabei, Kai Ling Kong

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: An excessive rise in maternal lipids during pregnancy may have detrimental impacts on maternal and fetal health leading to adverse pregnancy outcomes. However, knowledge gaps exist with respect to the association between lipid biomarkers and birth outcomes.

METHODS: We conducted a secondary data analysis of healthy pregnant women (N = 25) with mid-pregnancy fasting serum samples collected at 22-28 weeks of gestation and birth outcome data. Serum was analyzed for conventional lipid profile (total-C, HDL-C, LDL-C, and triglycerides) and lipoprotein subclass distribution, including particle number (nM) and size (nm), for very low-density lipoprotein (VLDL)/chylomicron (CM), low density lipoprotein (LDL ...


Pharmacometabolomics Profiling Of Preterm Infants Validates Patterns Of Metabolism Associated With Response To Dexamethasone Treatment For Bronchopulmonary Dysplasia., Bradley Stockard, Cheri Gauldin, William E. Truog, Tamorah Lewis Jun 2022

Pharmacometabolomics Profiling Of Preterm Infants Validates Patterns Of Metabolism Associated With Response To Dexamethasone Treatment For Bronchopulmonary Dysplasia., Bradley Stockard, Cheri Gauldin, William E. Truog, Tamorah Lewis

Manuscripts, Articles, Book Chapters and Other Papers

Bronchopulmonary dysplasia (BPD) is one of the most common health complications of premature birth. Corticosteroids are commonly used for treatment of BPD, but their use is challenging due to variability in treatment response. Previous pharmacometabolomics study has established patterns of metabolite levels with response to dexamethasone. We obtained additional patient samples for metabolomics analysis to find associations between the metabolome and dexamethasone response in a validation cohort. A total of 14 infants provided 15 plasma and 12 urine samples. The measure of treatment response was the calculated change in respiratory severity score (deltaRSS) from pre-to-post treatment. Each metabolite was assessed ...


Genomic Answers For Children: Dynamic Analyses Of >1000 Pediatric Rare Disease Genomes., Ana S A Cohen, Emily G. Farrow, Ahmed Abdelmoity, Joseph Alaimo, Shivarajan Manickavasagam Amudhavalli, John Anderson, Lalit R. Bansal, Lauren E. Bartik, Primo Baybayan, Bradley Belden, Courtney D. Berrios, Rebecca L. Biswell, Pawel Buczkowicz, Orion Buske, Shreyasee Chakraborty, Warren A. Cheung, Keith A. Coffman, Ashley M. Cooper, Laura A. Cross, Tom Curran, Thuy Tien T. Dang, Mary M. Elfrink, Kendra Engleman, Erin Day Fecske, Cynthia Fieser, Keely M. Fitzgerald, Emily Fleming, Randi N. Gadea, Jennifer L. Gannon, Rose N. Gelineau-Morel, Margaret Gibson, Jeffrey Goldstein, Elin Grundberg, Kelsee Halpin, Brian S. Harvey, Bryce Heese, Wendy Hein, Suzanne M. Herd, Susan Starling Hughes, Mohammed Ilyas, Jill Jacobson, Janda L. Jenkins, Shao Jiang, Jeffrey J. Johnston, Kathryn Keeler, Jonas Korlach, Jennifer Kussman, Christine Lambert, Caitlin E. Lawson, Jean-Baptist Lepichon, J Steven Leeder, Vicki C. Little, Daniel A. Louiselle, Michael Lypka, Brittany D. Mcdonald, Neil Miller, Ann Modrcin, Annapoorna Nair, Shelby H. Neal, Christopher M. Oermann, Donna M. Pacicca, Kailash Pawar, Nyshele L. Posey, Nigel Price, Laura M B Puckett, Julio Quezada, Nikita Raje, William J. Rowell, Eric T. Rush, Venkatesh Sampath, Carol J. Saunders, Caitlin Schwager, Richard M. Schwend, Elizabeth Shaffer, Craig Smail, Sarah E. Soden, Meghan Strenk, Bonnie Sullivan, Brooke Sweeney, Jade B. Tam-Williams, Adam Walter, Holly Welsh, Aaron M. Wenger, Laurel K. Willig, Yun Yan, Scott T. Younger, Dihong Zhou, Tricia N. Zion, Isabelle Thiffault, Tomi Pastinen Jun 2022

Genomic Answers For Children: Dynamic Analyses Of >1000 Pediatric Rare Disease Genomes., Ana S A Cohen, Emily G. Farrow, Ahmed Abdelmoity, Joseph Alaimo, Shivarajan Manickavasagam Amudhavalli, John Anderson, Lalit R. Bansal, Lauren E. Bartik, Primo Baybayan, Bradley Belden, Courtney D. Berrios, Rebecca L. Biswell, Pawel Buczkowicz, Orion Buske, Shreyasee Chakraborty, Warren A. Cheung, Keith A. Coffman, Ashley M. Cooper, Laura A. Cross, Tom Curran, Thuy Tien T. Dang, Mary M. Elfrink, Kendra Engleman, Erin Day Fecske, Cynthia Fieser, Keely M. Fitzgerald, Emily Fleming, Randi N. Gadea, Jennifer L. Gannon, Rose N. Gelineau-Morel, Margaret Gibson, Jeffrey Goldstein, Elin Grundberg, Kelsee Halpin, Brian S. Harvey, Bryce Heese, Wendy Hein, Suzanne M. Herd, Susan Starling Hughes, Mohammed Ilyas, Jill Jacobson, Janda L. Jenkins, Shao Jiang, Jeffrey J. Johnston, Kathryn Keeler, Jonas Korlach, Jennifer Kussman, Christine Lambert, Caitlin E. Lawson, Jean-Baptist Lepichon, J Steven Leeder, Vicki C. Little, Daniel A. Louiselle, Michael Lypka, Brittany D. Mcdonald, Neil Miller, Ann Modrcin, Annapoorna Nair, Shelby H. Neal, Christopher M. Oermann, Donna M. Pacicca, Kailash Pawar, Nyshele L. Posey, Nigel Price, Laura M B Puckett, Julio Quezada, Nikita Raje, William J. Rowell, Eric T. Rush, Venkatesh Sampath, Carol J. Saunders, Caitlin Schwager, Richard M. Schwend, Elizabeth Shaffer, Craig Smail, Sarah E. Soden, Meghan Strenk, Bonnie Sullivan, Brooke Sweeney, Jade B. Tam-Williams, Adam Walter, Holly Welsh, Aaron M. Wenger, Laurel K. Willig, Yun Yan, Scott T. Younger, Dihong Zhou, Tricia N. Zion, Isabelle Thiffault, Tomi Pastinen

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PURPOSE: This study aimed to provide comprehensive diagnostic and candidate analyses in a pediatric rare disease cohort through the Genomic Answers for Kids program.

METHODS: Extensive analyses of 960 families with suspected genetic disorders included short-read exome sequencing and short-read genome sequencing (srGS); PacBio HiFi long-read genome sequencing (HiFi-GS); variant calling for single nucleotide variants (SNV), structural variant (SV), and repeat variants; and machine-learning variant prioritization. Structured phenotypes, prioritized variants, and pedigrees were stored in PhenoTips database, with data sharing through controlled access the database of Genotypes and Phenotypes.

RESULTS: Diagnostic rates ranged from 11% in patients with prior negative ...


Global Health Electives In The Covid-19 Era: Resuming Travel And Strengthening Global Health Academic Partnerships., Heather Haq, Amos Msekandiana, Mogomotsi Matshaba, Linoeo Thahane, Jennifer Watts, Reena Tam, Nicole St Clair, Charles Schubert, Amy Rule, Pia Pannaraj, Michael Pitt, David Oleson, Brittany Murray, Lee Morris, Joanne Mendoza, Megan Mchenry, Elizabeth Keating, Kathy Ferrer, Heather Crouse, Tania Condurache, Maneesh Batra, Adelaide Barnes, James Conway May 2022

Global Health Electives In The Covid-19 Era: Resuming Travel And Strengthening Global Health Academic Partnerships., Heather Haq, Amos Msekandiana, Mogomotsi Matshaba, Linoeo Thahane, Jennifer Watts, Reena Tam, Nicole St Clair, Charles Schubert, Amy Rule, Pia Pannaraj, Michael Pitt, David Oleson, Brittany Murray, Lee Morris, Joanne Mendoza, Megan Mchenry, Elizabeth Keating, Kathy Ferrer, Heather Crouse, Tania Condurache, Maneesh Batra, Adelaide Barnes, James Conway

Manuscripts, Articles, Book Chapters and Other Papers

No abstract provided.


Cross-Reactive Immunity Against The Sars-Cov-2 Omicron Variant Is Low In Pediatric Patients With Prior Covid-19 Or Mis-C., Juanjie Tang, Tanya Novak, Julian Hecker, Gabrielle Grubbs, Fatema Tuz Zahra, Lorenza Bellusci, Sara Pourhashemi, Janet Chou, Kristin Moffitt, Natasha B. Halasa, Stephanie P. Schwartz, Tracie C. Walker, Keiko M. Tarquinio, Matt S. Zinter, Mary A. Staat, Shira J. Gertz, Natalie Z. Cvijanovich, Jennifer E. Schuster, Laura L. Loftis, Bria M. Coates, Elizabeth H. Mack, Katherine Irby, Julie C. Fitzgerald, Courtney M. Rowan, Michele Kong, Heidi R. Flori, Aline B. Maddux, Steven L. Shein, Hillary Crandall, Janet R. Hume, Charlotte V. Hobbs, Adriana H. Tremoulet, Chisato Shimizu, Jane C. Burns, Sabrina R. Chen, Hye Kyung Moon, Christoph Lange, Adrienne G. Randolph, Surender Khurana May 2022

Cross-Reactive Immunity Against The Sars-Cov-2 Omicron Variant Is Low In Pediatric Patients With Prior Covid-19 Or Mis-C., Juanjie Tang, Tanya Novak, Julian Hecker, Gabrielle Grubbs, Fatema Tuz Zahra, Lorenza Bellusci, Sara Pourhashemi, Janet Chou, Kristin Moffitt, Natasha B. Halasa, Stephanie P. Schwartz, Tracie C. Walker, Keiko M. Tarquinio, Matt S. Zinter, Mary A. Staat, Shira J. Gertz, Natalie Z. Cvijanovich, Jennifer E. Schuster, Laura L. Loftis, Bria M. Coates, Elizabeth H. Mack, Katherine Irby, Julie C. Fitzgerald, Courtney M. Rowan, Michele Kong, Heidi R. Flori, Aline B. Maddux, Steven L. Shein, Hillary Crandall, Janet R. Hume, Charlotte V. Hobbs, Adriana H. Tremoulet, Chisato Shimizu, Jane C. Burns, Sabrina R. Chen, Hye Kyung Moon, Christoph Lange, Adrienne G. Randolph, Surender Khurana

Manuscripts, Articles, Book Chapters and Other Papers

Neutralization capacity of antibodies against Omicron after a prior SARS-CoV-2 infection in children and adolescents is not well studied. Therefore, we evaluated virus-neutralizing capacity against SARS-CoV-2 Alpha, Beta, Gamma, Delta and Omicron variants by age-stratified analyses (5 years of age. As expected, convalescent pediatric COVID-19 and MIS-C cohorts demonstrate higher neutralization titers than hospitalized acute COVID-19 patients. Overall, children and adolescents show some loss of cross-neutralization against all variants, with the most pronounced loss against Omicron. In contrast to SARS-CoV-2 infection, children vaccinated twice demonstrated higher titers against Alpha, Beta, Gamma, Delta and Omicron. These findings can influence transmission, re-infection ...


Eight Tips For The Implementation Of The First Licenced Peanut Allergy Oral Immunotherapy Into Clinical Practice., Jay M. Portnoy, Christina E. Ciaccio, Janet Beausoleil, George Du Toit, Stanley Fineman, Stephen A. Tilles, June Zhang, Claire Lawrence, Mohamed Yassine, S Shahzad Mustafa May 2022

Eight Tips For The Implementation Of The First Licenced Peanut Allergy Oral Immunotherapy Into Clinical Practice., Jay M. Portnoy, Christina E. Ciaccio, Janet Beausoleil, George Du Toit, Stanley Fineman, Stephen A. Tilles, June Zhang, Claire Lawrence, Mohamed Yassine, S Shahzad Mustafa

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Shared learnings from the early use of novel therapies can aid in their optimization. The recent introduction of peanut oral immunotherapy (peanut OIT; Palforzia [Peanut (Arachis hypogaea) Allergen Powder-dnfp]) for peanut allergy addresses a significant unmet need but also highlights the requirement for consideration of several factors by both prescribers and patients.

OBJECTIVE: To provide guidance for prescribers of licenced peanut OIT to facilitate treatment delivery and improve outcomes.

METHODS: Clinicians with experience of licenced peanut OIT (United States n = 6, United Kingdom n = 1) participated in a series of interviews and group discussions designed to elicit tips for ...


Burnout In Pediatric Nephrology Fellows And Faculty: Lessons From The Sustainable Pediatric Nephrology Workforce Project (Superpower)., Susan M. Halbach, Kartik Pillutla, Patricia Seo-Mayer, Alan Schwartz, Darcy K. Weidemann, John D. Mahan May 2022

Burnout In Pediatric Nephrology Fellows And Faculty: Lessons From The Sustainable Pediatric Nephrology Workforce Project (Superpower)., Susan M. Halbach, Kartik Pillutla, Patricia Seo-Mayer, Alan Schwartz, Darcy K. Weidemann, John D. Mahan

Manuscripts, Articles, Book Chapters and Other Papers

Physician well-being is an important contributor to both job satisfaction and patient outcomes. Rates of burnout among physicians vary by specialty, ranging from 35 to 70%. Among pediatric residents, longitudinal data demonstrates consistent rates of burnout around 50-60%, although little is known about burnout among pediatric subspecialty fellows. Specifically, the degree of burnout among pediatric nephrologists remains unknown, as does the impact faculty burnout may have on trainee burnout. We sought to evaluate prevalence and predictors of burnout among US pediatric nephrology fellows and faculty, and assess for interactions between groups. In this multi-center pilot survey of all United States ...


Iv Sotalol Use In Pediatric And Congenital Heart Patients: A Multicenter Registry Study., Lindsey Malloy-Walton, Nicholas H. Von Bergen, Seshadri Balaji, Peter S. Fischbach, Jason M. Garnreiter, S Yukiko Asaki, Jeffrey P. Moak, Luis A. Ochoa, Philip M. Chang, Hoang H. Nguyen, Akash R. Patel, Christa Kirk, Ashley K. Sherman, Jennifer N. Avari Silva, J Philip Saul May 2022

Iv Sotalol Use In Pediatric And Congenital Heart Patients: A Multicenter Registry Study., Lindsey Malloy-Walton, Nicholas H. Von Bergen, Seshadri Balaji, Peter S. Fischbach, Jason M. Garnreiter, S Yukiko Asaki, Jeffrey P. Moak, Luis A. Ochoa, Philip M. Chang, Hoang H. Nguyen, Akash R. Patel, Christa Kirk, Ashley K. Sherman, Jennifer N. Avari Silva, J Philip Saul

Manuscripts, Articles, Book Chapters and Other Papers

Background There is limited information regarding the clinical use and effectiveness of IV sotalol in pediatric patients and patients with congenital heart disease, including those with severe myocardial dysfunction. A multicenter registry study was designed to evaluate the safety, efficacy, and dosing of IV sotalol. Methods and Results A total of 85 patients (age 1 day-36 years) received IV sotalol, of whom 45 (53%) had additional congenital cardiac diagnoses and 4 (5%) were greater than 18 years of age. In 79 patients (93%), IV sotalol was used to treat supraventricular tachycardia and 4 (5%) received it to treat ventricular arrhythmias ...


Association Of Satisfaction With Treatment Decision And Failure Of Nonoperative Management Of Appendicitis In Children., Rebecca M. Rentea, Shawn D. St Peter May 2022

Association Of Satisfaction With Treatment Decision And Failure Of Nonoperative Management Of Appendicitis In Children., Rebecca M. Rentea, Shawn D. St Peter

Manuscripts, Articles, Book Chapters and Other Papers

No abstract provided.


The Burden Of Mental Health Conditions In Children With Ckd., Katherine L. Kurzinski, Darcy K. Weidemann May 2022

The Burden Of Mental Health Conditions In Children With Ckd., Katherine L. Kurzinski, Darcy K. Weidemann

Manuscripts, Articles, Book Chapters and Other Papers

No abstract provided.


Outstanding Outcomes In Infants With Kmt2a-Germline Acute Lymphoblastic Leukemia Treated With Chemotherapy Alone: Results Of The Children's Oncology Group Aall0631 Trial, Erin M. Guest, John A. Kairalla, Joanne M. Hilden, Zoann E. Dreyer, Andrew J. Carroll, Nyla A. Heerema, Cindy Y. Wang, Meenakshi Devidas, Lia Gore, Wanda L. Salzer, Naomi J. Winick, William L. Carroll, Elizabeth A. Raetz, Michael Borowitz, Mignon L. Loh, Stephen P. Hunger, Patrick A. Brown May 2022

Outstanding Outcomes In Infants With Kmt2a-Germline Acute Lymphoblastic Leukemia Treated With Chemotherapy Alone: Results Of The Children's Oncology Group Aall0631 Trial, Erin M. Guest, John A. Kairalla, Joanne M. Hilden, Zoann E. Dreyer, Andrew J. Carroll, Nyla A. Heerema, Cindy Y. Wang, Meenakshi Devidas, Lia Gore, Wanda L. Salzer, Naomi J. Winick, William L. Carroll, Elizabeth A. Raetz, Michael Borowitz, Mignon L. Loh, Stephen P. Hunger, Patrick A. Brown

Manuscripts, Articles, Book Chapters and Other Papers

No abstract provided.


Natural Killer Cells In Liver Transplantation: Can We Harness The Power Of The Immune Checkpoint To Promote Tolerance?, Jennifer Halma, Stephen Pierce, Rebecca Mclennan, Todd Bradley, Ryan T. Fischer May 2022

Natural Killer Cells In Liver Transplantation: Can We Harness The Power Of The Immune Checkpoint To Promote Tolerance?, Jennifer Halma, Stephen Pierce, Rebecca Mclennan, Todd Bradley, Ryan T. Fischer

Manuscripts, Articles, Book Chapters and Other Papers

The roles that natural killer (NK) cells play in liver disease and transplantation remain ill-defined. Reports on the matter are often contradictory, and the mechanisms elucidated are complex and dependent on the context of the model tested. Moreover, NK cell attributes, such as receptor protein expression and function differ among species, make study of primate or rodent transplant models challenging. Recent insights into NK function and NK-mediated therapy in the context of cancer therapy may prove applicable to transplantation. Of specific interest are immune checkpoint molecules and the mechanisms by which they modulate NK cells in the tumor micro-environment. In ...


Health And Dental Insurance And Health Care Utilization Among Children, Adolescents, And Young Adults With Ckd: Findings From The Ckid Cohort Study., Andrea R. Molino, Maria Lourdes G. Minnick, Judith Jerry-Fluker, Jacqueline Karita Muiru, Sara A. Boynton, Susan L. Furth, Bradley A. Warady, Derek K. Ng, Chronic Kidney Disease In Children Study May 2022

Health And Dental Insurance And Health Care Utilization Among Children, Adolescents, And Young Adults With Ckd: Findings From The Ckid Cohort Study., Andrea R. Molino, Maria Lourdes G. Minnick, Judith Jerry-Fluker, Jacqueline Karita Muiru, Sara A. Boynton, Susan L. Furth, Bradley A. Warady, Derek K. Ng, Chronic Kidney Disease In Children Study

Manuscripts, Articles, Book Chapters and Other Papers

Rationale & Objective: To understand the association between health and dental insurance status and health and dental care utilization, and their relationship with disease severity in a population with childhood-onset chronic kidney disease (CKD).

Study Design: Observational cohort study.

Settings & Participants: Nine hundred fifty-three participants contributing 4,369 person-visits (unit of analysis) in the United States enrolled in the Chronic Kidney Disease in Children (CKiD) Study from 2005 to 2019.

Exposures: Health insurance (private vs public vs none) and dental insurance (presence vs absence) self-reported at annual visits.

Outcomes: Self-reported suboptimal health care utilization in the past year, defined separately as not visiting a private physician, visiting the emergency room, visiting the emergency room at least twice, being hospitalized, and self-reported suboptimal dental care utilization over the past year, defined as not receiving dental care.

Analytical Approach: Repeated measures Poisson regression models were fit to estimate and compare utilization by insurance type and disease severity at the prior visit. Additional unadjusted and adjusted models were fit, as well as models including interactions between insurance and Black race, maternal education, and income.

Results: Those with public health insurance were more likely to report suboptimal health care utilization across the CKD severity spectrum, and lack of dental insurance was strongly associated with lack of dental care. These relationships varied depending on strata of socioeconomic status and race but the effect measure modification was not significant.

Limitations: Details of insurance coverage were unavailable; reasons for emergency care or type of private physician visited were unknown.

Conclusions: Pediatric nephrology programs may consider interventions to help direct supportive resources to families with public insurance who are at higher risk for suboptimal utilization of care. Insurance providers should identify areas to expand access for families of children with CKD.


Decreased Physical Activity Among Youth Resulting From Covid-19 Pandemic-Related School Closures: Natural Experimental Study., Amanda Grimes, Joseph S. Lightner, Katlyn Eighmy, Chelsea Steel, Robin P. Shook, Jordan A. Carlson Apr 2022

Decreased Physical Activity Among Youth Resulting From Covid-19 Pandemic-Related School Closures: Natural Experimental Study., Amanda Grimes, Joseph S. Lightner, Katlyn Eighmy, Chelsea Steel, Robin P. Shook, Jordan A. Carlson

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: The COVID-19 pandemic has resulted in the closure of schools and may have inadvertently resulted in decreased physical activity for youth. Emerging evidence suggests that school closures due to the COVID-19 pandemic could have hastened the inactivity of youth, possibly due to a lack of structure outside of school and increased access to sedentary activities.

OBJECTIVE: The purpose of this study was to assess changes in physical activity from pre-school closure (before the pandemic) to post-school closure (during the pandemic) among youth in spring 2020.

METHODS: This study used a natural experimental design; youth were enrolled in a physical ...


Pediatric Growth Patterns In Youth-Onset Type 2 Diabetes Mellitus: Implications For Physiologically-Based Pharmacokinetic Models., Chelsea M. Hosey, Kelsee Halpin, Valentina Shakhnovich, Chengpeng Bi, Brooke Sweeney, Yun Yan, J Steven Leeder Apr 2022

Pediatric Growth Patterns In Youth-Onset Type 2 Diabetes Mellitus: Implications For Physiologically-Based Pharmacokinetic Models., Chelsea M. Hosey, Kelsee Halpin, Valentina Shakhnovich, Chengpeng Bi, Brooke Sweeney, Yun Yan, J Steven Leeder

Manuscripts, Articles, Book Chapters and Other Papers

An accurate understanding of the changes in height and weight of children with age is critical to the development of models predicting drug concentrations in children (i.e., physiologically-based pharmacokinetic models). However, curves describing the growth of a typical population of children may not accurately characterize growth of children with various conditions, such as obesity. Therefore, to develop height and weight versus age growth curves for youth who were diagnosed with type 2 diabetes, we extracted data from electronic medical records. Robust nonlinear models were parameterized to the equations describing height and weight versus age as defined by the Centers ...


The Classification Of Scoliosis Braces Developed By Sosort With Srs, Ispo, And Posna And Approved By Esprm., Stefano Negrini, Angelo Gabriele Aulisa, Pavel Cerny, Jean Claude De Mauroy, Jeb Mcaviney, Andrew Mills, Sabrina Donzelli, Theodoros B. Grivas, M Timothy Hresko, Tomasz Kotwicki, Hubert Labelle, Louise Marcotte, Martin Matthews, Joe O'Brien, Eric C. Parent, Nigel Price, Rigo Manuel, Luke Stikeleather, Michael G. Vitale, Man Sang Wong, Grant Wood, James Wynne, Fabio Zaina, Marco Brayda Bruno, Suncica Bulat Würsching, Yilgor Caglar, Patrick Cahill, Eugenio Dema, Patrick Knott, Andrea Lebel, Grigorii Lein, Peter O. Newton, Brian G. Smith Apr 2022

The Classification Of Scoliosis Braces Developed By Sosort With Srs, Ispo, And Posna And Approved By Esprm., Stefano Negrini, Angelo Gabriele Aulisa, Pavel Cerny, Jean Claude De Mauroy, Jeb Mcaviney, Andrew Mills, Sabrina Donzelli, Theodoros B. Grivas, M Timothy Hresko, Tomasz Kotwicki, Hubert Labelle, Louise Marcotte, Martin Matthews, Joe O'Brien, Eric C. Parent, Nigel Price, Rigo Manuel, Luke Stikeleather, Michael G. Vitale, Man Sang Wong, Grant Wood, James Wynne, Fabio Zaina, Marco Brayda Bruno, Suncica Bulat Würsching, Yilgor Caglar, Patrick Cahill, Eugenio Dema, Patrick Knott, Andrea Lebel, Grigorii Lein, Peter O. Newton, Brian G. Smith

Manuscripts, Articles, Book Chapters and Other Papers

PURPOSE: Studies have shown that bracing is an effective treatment for patients with idiopathic scoliosis. According to the current classification, almost all braces fall in the thoracolumbosacral orthosis (TLSO) category. Consequently, the generalization of scientific results is either impossible or misleading. This study aims to produce a classification of the brace types.

METHODS: Four scientific societies (SOSORT, SRS, ISPO, and POSNA) invited all their members to be part of the study. Six level 1 experts developed the initial classifications. At a consensus meeting with 26 other experts and societies' officials, thematic analysis and general discussion allowed to define the classification ...


Association Of Abnormal Findings On Neonatal Cranial Ultrasound With Neurobehavior At Neonatal Intensive Care Unit Discharge In Infants Born Before 30 Weeks' Gestation., Jennifer Helderman, T Michael O'Shea, Lynne Dansereau, Jennifer Check, Julie A. Hofheimer, Lynne M. Smith, Elisabeth Mcgowan, Charles R. Neal, Brian S. Carter, Steven L. Pastyrnak, Bradford Betz, Joseph Junewick, Heather L. Borders, Sheri A. Dellagrotta, Barry M. Lester Apr 2022

Association Of Abnormal Findings On Neonatal Cranial Ultrasound With Neurobehavior At Neonatal Intensive Care Unit Discharge In Infants Born Before 30 Weeks' Gestation., Jennifer Helderman, T Michael O'Shea, Lynne Dansereau, Jennifer Check, Julie A. Hofheimer, Lynne M. Smith, Elisabeth Mcgowan, Charles R. Neal, Brian S. Carter, Steven L. Pastyrnak, Bradford Betz, Joseph Junewick, Heather L. Borders, Sheri A. Dellagrotta, Barry M. Lester

Manuscripts, Articles, Book Chapters and Other Papers

Importance: Cranial ultrasound (CUS) findings are routinely used to identify preterm infants at risk for impaired neurodevelopment, and neurobehavioral examinations provide information about early brain function. The associations of abnormal findings on early and late CUS with neurobehavior at neonatal intensive care unit (NICU) discharge have not been reported.

Objective: To examine the associations between early and late CUS findings and infant neurobehavior at NICU discharge.

Design, Setting, and Participants: This prospective cohort study included infants enrolled in the Neonatal Neurobehavior and Outcomes in Very Preterm Infants Study between April 2014 and June 2016. Infants born before 30 weeks' gestational ...


Barriers, Access And Management Of Paediatric Epilepsy With Telehealth., Kari Gali, Sucheta Joshi, Sarah Hueneke, Alexis Katzenbach, Linda Radecki, Trisha Calabrese, Linda Fletcher, Cristina Trandafir, Carey Wilson, Monisha Goyal, Courtney J. Wusthoff, Jean-Baptist Lepichon, Rhonda Corvalan, April Golson, Jessica Hardy, Michael Smith, Elizabeth Cook, Joshua L. Bonkowsky Apr 2022

Barriers, Access And Management Of Paediatric Epilepsy With Telehealth., Kari Gali, Sucheta Joshi, Sarah Hueneke, Alexis Katzenbach, Linda Radecki, Trisha Calabrese, Linda Fletcher, Cristina Trandafir, Carey Wilson, Monisha Goyal, Courtney J. Wusthoff, Jean-Baptist Lepichon, Rhonda Corvalan, April Golson, Jessica Hardy, Michael Smith, Elizabeth Cook, Joshua L. Bonkowsky

Manuscripts, Articles, Book Chapters and Other Papers

Access to paediatric neurology care is complex, resulting in significant wait times and negative patient outcomes. The goal of the American Academy of Pediatrics National Coordinating Center for Epilepsy's project, Access Improvement and Management of Epilepsy with Telehealth (AIM-ET), was to identify access and management challenges in the deployment of telehealth technology. AIM-ET organised four paediatric neurology teams to partner with primary-care providers (PCP) and their multidisciplinary teams. Telehealth visits were conducted for paediatric epilepsy patients. A post-visit survey assessed access and satisfaction with the telehealth visit compared to an in-person visit. Pre/post surveys completed by PCPs and ...