Pediatrics Commons^™

Injuries In Children Undergoing Subspecialty Abuse Evaluations Because Of Intimate Partner Violence., M Katherine Henry, Gunjan Tiyyagura, Joanne N. Wood, Jan Leonard, Kristine A. Campbell, Daniel M. Lindberg, Angela N. Bachim, Farah W. Brink, Lori D. Frasier, Nancy S. Harper, Claire Hickey, Natalie Laub, John D. Melville, Hannah Sahud, Philip V. Scribano

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND AND OBJECTIVES: Intimate partner violence (IPV) and child physical abuse often co-occur, but the frequency and risk factors for abusive injuries in IPV-exposed children remain unknown. Our objectives were to (1) determine frequency of skeletal surveys (SSs) and neuroimaging use because of IPV and their diagnostic value in children aged less than 24 months evaluated by a child abuse pediatrics specialist (CAP) and (2) identify factors associated with performance of and findings on SS and neuroimaging.

METHODS: We conducted a retrospective study of children aged less than 24 months undergoing CAP consultations because of IPV exposure from February 2021 …

Bridging Pediatric To Adult Care In Cystinosis: A Scoping Review Of Healthcare Transition Of Care Protocols And A Roadmap For Future Practice., Sanat Subhash, Nicholas Pantelakis, Kyle Backston, Ruhaan Bajpai, Amir Safadi, Brandon Petrovich, Bradley A. Warady, Maria Diaz-Gonzalez De Ferris, Rupesh Raina

Manuscripts, Articles, Book Chapters and Other Papers

Cystinosis is a rare lysosomal storage disorder that affects approximately 1 in 100,000 to 200,000 live births worldwide. Long-term graft success in cystinosis depends on cysteamine adherence and structured multidisciplinary transition, supported by protocols developed by both pediatric nephrologists and hospital organizations. This review explores institutional and regional care models, structured programs such as the RISE protocol and Got Transition's Six Core Elements, and major barriers including adult nephrology expertise, psychosocial stressors, and insurance coverage gaps. Additionally, we explore the impact of digital health tools for their role in supporting cysteamine adherence and maintaining continuity of care. Emerging technologies such …

Birth-Size Reference Charts For Normal Nursery Newborns Between 35.0 And 41.6 Weeks., Fu-Sheng Chou, Hung-Wen Yeh, Crystal Hsueh, Irene E. Olsen, Veeral N. Tolia, Reese H. Clark

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Current birth-size reference charts for nursery use may inaccurately categorize newborn size, impacting care. We aimed to develop new charts using data from uncomplicated newborns admitted to US nurseries.

METHODS: We analyzed de-identified data from newborns admitted to US normal newborn nurseries between 2021 and 2024. Statistical outliers were excluded, and gestational age was recorded in days. Birth weight, length, head circumference, and BMI models were developed by a randomly selected subset and validated by the remaining data. Proportions of newborns below the 10th percentile and above the 90th percentile were compared with the 2010 Olsen and 2013 Fenton …

Healthcare Provider's Perceptions Of Family Values When Making End-Of-Life Care Decisions For Their Children: Developing And Implementing A Survey Tool., Nithya Sivakumar, Stephanie Kukora, Cherie Ginwalla, Satyan Lakshminrusimha, Jennifer Rosenthal

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Healthcare providers help families navigate end-of-life care decisions in the neonatal intensive care unit (NICU) and pediatric intensive care unit (PICU); however, limited studies exist regarding what values providers perceive families utilize when in these situations.

OBJECTIVE: To evaluate providers' perceptions of values that families considered when making end-of-life care decisions for their child.

DESIGN: Develop a novel survey tool to understand providers' perceptions of values families considered when making end-of-life care decisions for their children and distribute the survey tool to providers in a single quaternary care children's hospital within a university hospital.

METHODS: The novel survey tool …

Association Between Trainee Involvement During Pediatric And Congenital Cardiac Catheterization And Procedural Outcomes., Natalie Jayaram, John A. Spertus, Kevin F. Kennedy, Andrew C. Glatz

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BACKGROUND: Participation in the cardiac catheterization laboratory is a requirement of cardiology fellowship training. We sought to determine whether trainee presence is associated with outcomes during pediatric and congenital cardiac catheterization.

METHODS: We identified catheterizations between January 2011 and September 2020 within the IMPACT (Improving Pediatric and Adult Congenital Treatment) Registry. Multivariable multilevel regression was used to determine the association between trainee presence and procedural outcomes.

RESULTS: Of 122 760 catheterizations at 107 academic hospitals, a trainee was present in 71 651 (58.4%) cases. Rates of major adverse events were similar between trainee and nontrainee cases (9.0% versus 8.0%). Contrast …

Prenatal Predictors Of Fetal And Neonatal Death In Truncus Arteriosus: A Fetal Heart Society Research Collaborative Study., Kelly Cox, Nazia Husain, Deidra Ansah, Tiffany Knight, Alexandra Channing, Bettina Cuneo, Preeta Dhanantwari, Mary Donofrio, Miwa Geiger, Lisa Howley, Lisa K. Hornberger, Simone Javeri, Edward G. Jones, Michelle Kaplinski, Ann Kavanaugh-Mchugh, Maria Kiaffas, Katherine Kosiv, Christina Laternser, Olivia Low, Anita J. Moon-Grady, Shabnam Peyvandi, Nelangi Pinto, Avaliese Porlier, Aaron Prosnitz, Rashmi Rao, David Schidlow, Elena Sinkovskaya, Ranjini Srinivasan, Corey Stiver, Emilio Quezada, Bhawna Arya, Sheetal Patel

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BACKGROUND: Fetal and neonatal outcomes and factors increasing mortality risk in fetal truncus arteriosus are not well characterized. We aimed to examine the prenatally encountered cardiac spectrum, define extracardiac and genetic associations, explore clinical outcomes and identify prenatal factors associated with worse outcomes in a contemporary large cohort.

METHODS: A multicenter retrospective cohort study was conducted via the Fetal Heart Society Research Collaborative including fetal truncus arteriosus cases encountered between January 1, 2010, and September 1, 2021, within 22 North American cardiac centers. Demographic, clinical, anatomic, and functional fetal echocardiographic variables were analyzed for associations with presurgical death (fetal death/neonatal …

Pneumococcal Colonization In Pediatric Patients Undergoing Hematopoietic Cell Transplantation., Liset Olarte, Jennifer E. Schuster, Ibrahim Ahmed, Kristina G. Hulten

Manuscripts, Articles, Book Chapters and Other Papers

Despite the increased risk of invasive pneumococcal disease among pediatric hematopoietic cell transplant (HCT) recipients, pneumococcal colonization has not been evaluated in this population. We prospectively assessed longitudinal pneumococcal colonization in 22 pediatric HCT recipients from conditioning therapy to 100 days post-HCT. A higher likelihood of pneumococcal colonization was observed in the late post-HCT period (weeks 9-14) compared with the early post-HCT period (weeks 1-8), with odds increasing with each additional week after conditioning.IMPORTANCEThis is the first study to longitudinally evaluate pneumococcal colonization in pediatric hematopoietic cell transplant (HCT) recipients from the onset of conditioning therapy to 100 days post-HCT. …

Development And Implementation Of Educational Modules On Management Of Neonates With Critical Congenital Heart Disease In The Delivery Room (Learn-Chd)., Noorjahan Ali, Brenda Law, Alyssa R. Thomas, Philip T. Levy, Ruby Gupta, Summer Elshenawy, Danielle Reed, Leeann R. Pavlek, Jennifer Shepherd, Sharada H. Gowda, Molly K. Ball, Beth Ann Johnson, Chloe Joynt

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Neonates with congenital heart disease may require delivery room interventions beyond standard care. Because existing guidelines and educational programs rarely address these needs, we developed and evaluated targeted educational modules.

METHODS: Teams were randomized to online eLearning modules or directed readings. Individual pre-/post-knowledge scores were compared. Team performance was tested in simulated delivery scenarios including abruption, hypoplastic left heart syndrome, d-transposition of great arteries and congenital complete heart block.

RESULTS: 32 teams from 9 centers participated. The module group had improved knowledge scores (mean change 6% vs -0.3% e-Learning group, p = 0.01). Simulation performance was similar between groups …

Cytokine-Based Strategies To Improve Prognostic Enrichment Of Pediatric Ards., E Scott Halstead, Todd M. Umstead, Zissis C. Chroneos, Cainan Riccio-Baum, S Rameeza Allie, Daniel J. Mckeone, Debbie Spear, Ryan A. Nofziger, Ronald C. Sanders, Danielle Ahn, Jasmine C. Dowell, Asdis Finnsdottir Wagner, Neal J. Thomas, Prithvi Sendi, W Joshua Frazier, Courtney M. Rowan, Parag N. Jain, Dalia A. Bashir, Stuart H. Friess, Brian M. Varisco, Jocelyn Grunwell, Aline B. Maddux, Stephen T. Famularo, Nadir Yehya

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Hyper-inflammation is common to multiple critical care syndromes, including acute respiratory distress syndrome (ARDS) and sepsis, and is associated with worse outcomes. A signature of hyper-inflammatory ARDS has been described in adults using IL-6, TNFR1, and bicarbonate, and has prognostic utility. We investigated the application of this traditional parsimonious signature to pediatric ARDS patients and tested whether we could improve prognostic enrichment using other cytokines.

METHODS: We leveraged a prospective multicenter cohort study of 500 children with ARDS (Linking Endotypes and Outcomes in Pediatric Acute Respiratory Distress Syndrome [LEOPARDS]; NCT04113434) study. Plasma samples were obtained within 24 h of …

Not Just A Pediatric Condition: Down Syndrome Across The Lifespan., Emily Haury, Jacqueline Kitchen, Brenda Rogers

Manuscripts, Articles, Book Chapters and Other Papers

With increasing life expectancy for individuals with Down Syndrome (DS), there are growing numbers of adult DS patients needing care from primary care physicians who are knowledgeable regarding their health needs and risks. The Global Down Syndrome Foundation (GDSF) Medical Care Guidelines for Adults with Down Syndrome identify important areas of focus: mental health, dementia, diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, hypothyroidism and celiac disease. Additionally, there are unique considerations regarding cancer risk and screenings, as well as vaccination. Young adults with DS should have a structured transition from pediatric to adult care like any patient with chronic illness …

Transoral Endoscopic Stapled Diverticulotomy For Pediatric Esophageal Diverticulum: A Case Report, Nadeen Alturki, Huma Quraishi, Keith A. Kuenzler

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Introduction

Case presentation

Factors Associated With Pre-Donation Health-Related Quality-Of-Life Among Pediatric Sibling Hematopoietic Cell Donors: A Donorkids Ql Study., Galen E. Switzer, Jessica G. Bruce, Bronwen E. Shaw, Vidya Kuniyil, James W. Varni, Brandan J. Butler, Connor Erickson, Alisha Mussetter, Allison Neutzling, Hisham Abdel-Azim, Paibel Aguayo-Hiraldo, Eric J. Anderson, Victor M. Aquino, Karlie Boone, Farid Boulad, Joseph H. Chewning, Jessica Cooper, Ann Dahlberg, Christopher C. Dvorak, Jorge Galvez-Silva, Ann E. Haight, Jennifer A. Hoag, Michelle Hudspeth, David Jacobsohn, Kimberly A. Kasow, Carrie L. Kitko, Lakshmanan Krishnamurti, Lisa Madden, Holly K. Miller, Erin Morales, Timothy S. Olson, Anna B. Pawlowska, Vinod K. Prasad, Troy C. Quigg, Andromachi Scaradavou, Niketa C. Shah, Shalini Shenoy, Nancy Terwilliger, Lori Wiener, Gregory A. Yanik, Lolie C. Yu, Michael A. Pulsipher

Manuscripts, Articles, Book Chapters and Other Papers

Due to limited published data assessing pediatric hematopoietic cell donor experiences, we previously conducted one of the largest quantitative investigations of pediatric donor experiences and health-related quality-of-life (HRQoL) at the time (RDSafe). Findings from RDSafe demonstrated that a subset of pediatric HC donors experienced very poor HRQoL; unfortunately, that dataset addressed only a limited number of factors, and key associations explaining this poor HRQoL were not found. In this study, our goal was to address that deficit by describing pre-donation donor HRQoL in detail and identifying factors across five key domains that were associated with donor HRQoL. We conducted a …

Quality Improvement Project To Reduce Wait Time For Pediatric Gastrointestinal Procedures., Jennifer Colombo, Nicholas Clark, Laura E. Shroyer, Dustin J. Hahn, Jonathan Patterson, Kenneth Sam

Manuscripts, Articles, Book Chapters and Other Papers

INTRODUCTION: Delays in care can lead to poor health outcomes and suboptimal patient and family experiences. We aimed to reduce the average wait time for gastrointestinal endoscopic procedures (procedure request to procedure completion) from 145 to 15 days (a 90% reduction) within 4 months (November 2023 to March 2024).

METHODS: A3 problem-solving methodology was used. The primary intervention was a multiday, multidisciplinary improvement workshop. Outcome measures included (1) procedure request date to procedure completion date, and (2) favorable patient satisfaction score for timeliness of access to care. Process measures included (1) procedure request date to date procedure scheduled by staff, …

Clinical Ethics Training Needs Among Pediatricians And Pediatric Residents In Ethiopia: Conference-Based Cross-Sectional Survey., Betelehem Kassa, Addishiwot Melesse, Eyob Kebede Etissa, Bitseat W. Haile, Atnafu Mekonnen Tekleab, Stephanie Kukora

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Pediatricians encounter ethically challenging cases in clinical practice throughout the world. In Ethiopia, ethically distressing pediatric cases are heightened by limited resources, lack of ethical frameworks to guide clinical care and withdrawal of supportive therapies, absence of child protection laws, and dearth of trained ethics consultants or institutional ethics committees providing clinical ethics consultation. Ethics training remains limited in undergraduate medical programs and absent in the resident curriculum at most institutions.

METHODS: A survey of Pediatric Residents and Pediatricians attending the Ethiopian Pediatric Society's 24th Annual Conference on March 2023 was conducted using a self-administered, clinical ethics needs assessment. …

The Critical Pediatric Obesity Window: Pre-Pubertal Metabolic Disease And The Fallacy Of Delayed Intervention., Matthew Lindquist, Brooke Sweeney

Manuscripts, Articles, Book Chapters and Other Papers

Despite increasing recognition of pediatric obesity as a chronic disease, many clinicians continue to rely on "watchful waiting," assuming pubertal growth will mitigate excess weight and metabolic risk. Current evidence contradicts this approach. Children under 12 years of age with obesity frequently demonstrate clinically significant metabolic disease, including insulin resistance, dyslipidemia, dysglycemia, and metabolic dysfunction-associated steatotic liver disease (MASLD), often before symptoms emerge. Puberty does not reverse these processes; rather, physiologic pubertal insulin resistance amplifies preexisting metabolic dysfunction and accelerates disease progression. Delayed intervention allows potentially irreversible injury during a critical period of metabolic plasticity. This article reviews contemporary biologic …

State And Regional Variation In Access To Pediatric Extracorporeal Membrane Oxygenation., Allan M. Joseph, Andrew J. Lautz, Carlie N. Myers, Ranjit S. Chima, Juan P. Gurria, Shafee Salloum, Wendy Hasson, Matthew P. Malone, Jenna Miller, Reanna Smith, Maya L. Dewan

Manuscripts, Articles, Book Chapters and Other Papers

Extracorporeal membrane oxygenation (ECMO) is only available in specialized medical centers. We conducted a geospatial analysis and found state- and region-level variation in the supply of ECMO centers, and the number of children who had access to ECMO. These findings may help target areas for the development of new ECMO programs.

How To Assess Ventricular Function By Fetal Echocardiography: Expert Guidance From The Fetal Heart Society., S R Patel, Nitin Madan, L Eckersley, Z Roytman, M Perez, L Gindes, L K Hornberger

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No abstract provided.

Current Practices And Variations Among Pediatric Severe Asthma Programs In The United States-The North American Severe Pediatric Asthma Consortium., Kristina Gaietto, Nadia Krupp, Avani V. Shah, Erhan Ararat, Samantha H. Averill, Sachin Baxi, Matejka Cernelc-Kohan, Jeffrey M. Chambliss, Heather De Keyser, Monica Federico, Bob Geng, Akilah A. Jefferson, Parisa Kaviany, Lila C. Kertz, Kirsten Kloepfer, Allyson Larkin, Sydney Leibel, Tanya Martinez-Fernandez, Samira Naime, Robert D. Pesek, Dinesh K. Pillai, Deepa Rastogi, Katherine Rivera-Spoljaric, Kristie R. Ross, Franziska J. Rosser, Tregony C. Simoneau, Jade Tam-Williams, Kelan G. Tantisira, William Anderson, Jonathan M. Gaffin, Theresa W. Guilbert, Erick Forno

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Severe and difficult to treat asthma in children is a complex condition causing significant morbidity and associated healthcare costs. While treatment guidelines exist for severe asthma, optimal treatment approaches for the pediatric population are less well established. Furthermore, best practices regarding real world management and implementation of guidelines for the severe pediatric asthma population are lacking. In order to provide care for this population, institutions around the United States have developed multidisciplinary severe pediatric asthma programs (SPAPs). In recent years, the North American Severe Pediatric Asthma Consortium (NASPAC) was established as a mechanism for SPAPs to collaborate and share …

Imaging And Non-Imaging Approaches For The Diagnosis And Monitoring Of Necrotizing Enterocolitis-What Lies Ahead?, Indrani Bhattacharjee, Catalina Le Cacheux, Eric B. Ortigoza, Jonathan Dillman, Sherwin S. Chan, Alain Cuna

Manuscripts, Articles, Book Chapters and Other Papers

Necrotizing enterocolitis (NEC) remains one of the most serious gastrointestinal emergencies in preterm infants, and imaging plays a central role in diagnosis and clinical management. Historically, evaluation has relied primarily on abdominal radiography, which remains widely available and embedded in established diagnostic frameworks. However, the hallmark radiographic signs of NEC (i.e., pneumatosis intestinalis, portal venous gas, and free air) reflect relatively advanced manifestations of intestinal injury that indicate established mucosal disruption or transmural necrosis. Bowel ultrasound has increasingly complemented radiography by enabling real-time assessment of bowel wall integrity, perfusion, motility, and intra-abdominal fluid, providing physiologic information that may refine clinical …

Retrospective Chart Review Of Immobilized Lipase Cartridge Use In Children With Short Bowel Syndrome., Elizaveta Khenner, Jennifer Morton, Laura Green, Ashlee Yoder, Kayla Paul, Ann E. Remmers, William San Pablo

Manuscripts, Articles, Book Chapters and Other Papers

This retrospective, single-center chart review studied the use of an in-line, immobilized lipase cartridge (ILC) in children with short bowel syndrome (SBS) at Children's Mercy Hospital. For parenteral nutrition (PN)-dependent patients, the primary endpoint was enteral feeding progression, evaluated by comparing monthly change from baseline in PN and enteral nutrition (EN) after the start of ILC use. For patients with enteral autonomy, changes from baseline in growth measure z-scores were evaluated. In 9 PN-dependent patients (with Type II or III SBS), mean PN use decreased 10.6 kcal/kg/day (15.5%) and mean EN use increased by 6.0 kcal/kg/day (39.9%) after 3.8 to …

Incidental Colorectal Adenomas In Adolescents: Clinical Management, Genetic Evaluation, And Surveillance., Brett J. Hoskins, Shlomi Cohen, Colleen B. Flahive, Isabel Rojas, Aparajita Singh, Thomas M. Attard

Manuscripts, Articles, Book Chapters and Other Papers

The rising incidence of early-onset colorectal cancer has renewed attention to colorectal adenomas in adolescents and young adults (AYA), although these lesions remain rare and poorly characterized in adolescents. Lack of age-specific guidance creates uncertainty regarding genetic evaluation, surveillance intervals, and long-term management when these lesions are identified in adolescents. This narrative review synthesizes current evidence and expert perspective on epidemiology, evaluation, endoscopic management, surveillance, genetic considerations, and psychosocial implications of incidentally identified colorectal adenomas across the AYA spectrum, with emphasis on adolescents as a distinct clinical population. Available data largely derive from adults aged 20-49 years but suggest that …

Prevalence And Aetiology Of Cerebral Palsy Among Nigerian Children: A Systematic Review And Meta-Analysis., Udochukwu Michael Diala, Aderonke O. Uhunmwangho-Courage, Fatima Abdullahi, Paul Ikhurionan, Caitlin Bakker, Duke Appiah, David Danjuma Shwe, Rose N. Gelineau-Morel, Kabiru Gurama, Olugbenga Akinyemi Ofakunrin, Angela Mcgillivray, Gabriel E. Ofovwe, Tina Slusher

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Nigeria is among the leading countries contributing to the burden of cerebral palsy. Cerebral palsy (CP) is the commonest physical disability in childhood, accounting for 16.2% of child neurology referrals. Many cases of CP are preventable with simple interventions such as neonatal resuscitation and effective phototherapy. Lack of reliable data on the burden of disease limits comprehensive national policy directed to the prevention, holistic care and rehabilitation of patients with cerebral palsy in Nigeria. Therefore, to effectively address this problem, this study aimed to describe the pooled prevalence of CP in Nigeria, its potential causes and types.

METHODS: This …

Infection Prevention And Control Of Candida Auris In Pediatric Settings, Thomas S. Murray, Hana Hakim, Christelle Ilboudo, Lynn Ramírez-Ávila, Jana Shaw, Terri Stillwell, Patricia Budo, Bernard Ebruke, Noa Fleiss, Amanda Green, Matthew Linam, Roshni Mathew, April Mcdougal, Natalie Neu, Zoi Dorothea Pana, Karen Ravin, Ayelet Rosenthal, Jane D. Siegel, Katlyn Steimel, Amy Valencia, Carol Vance, Lars F. Westblade, Lisa Saiman

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Candida auris (also referred to as Candidozyma auris) is an emerging multidrug-resistant fungal pathogen associated with high morbidity and mortality. Existing infection prevention and control (IPC) guidance has largely focused on adult populations, with limited recommendations for pediatric healthcare and non-healthcare settings.

METHODS: The Society for Healthcare Epidemiology of America (SHEA) convened a multidisciplinary expert panel to develop IPC recommendations for C. auris. The panel developed recommendations using a structured, iterative Delphi consensus process with rounds of discussion, refinement, and anonymous electronic voting with predefined consensus thresholds. Panelists reviewed relevant peer-reviewed and gray literature integrated with expert …

Polygenic Risk Scores And Hla Class Ii Variants Are Biomarkers Of Corticosteroid Response In Childhood Nephrotic Syndrome., Tiffany Tu, Alejandro Ochoa, Amika Sood, Ashley Dabrik, Megan Chryst-Stangl, Brandon Lane, Guanghong Wu, Frank Donovan, Ursula Harper, Settara Chandrasekharappa, Christopher Esezobor, Adaobi Solarin, David Hooper, Christine Sethna, Sandra Amaral, Mahmoud Kallash, Michelle Rheault, Priya Verghese, Vikas Dharnidharka, Eloise Salmon, Patricia Weng, Tarak Srivastava, Michael E Seifert, Cozumel Pruette, David Selewski, Keisha Gibson, Tracy Hunley, Asiri Abeyagunawardena, Shenal Thalgahagoda, Arvind Bagga, Aditi Sinha, Nicholas Webb, Larry Greenbaum, Ali Gharavi, Krzysztof Kiryluk, Matthias Kretzler, Lisa Guay-Woodford, Simone Sanna-Cherchi, Agnieszka Bierzynska, Ania Koziell, Gavin Welsh, Moin Saleem, Charles Rotimi, Eileen Chambers, Cliburn Chan, Curegn Consortium, Pnrc Glomerular Disease Group, Cibmtr/Nmdp Consortium, Annette Jackson, Adebowale Adeyemo, Rasheed Gbadegesin

Manuscripts, Articles, Book Chapters and Other Papers

INTRODUCTION: Nephrotic syndrome (NS), a common glomerular disease in children, is classified based on response to corticosteroid therapy as either steroid-sensitive nephrotic syndrome (SSNS), or steroid-resistant nephrotic syndrome (SRNS). However, there are no current reliable predictors of therapy response at initial clinical presentation.

METHODS: To evaluate predictors, we conducted genome-wide association studies, developed polygenic risk scores (PRS) for therapy response and analyzed classical HLA alleles in 1,997 children (994 discovery and 1,003 replication/validation cohorts) previously unstudied children with NS and 3,558 ancestry-matched control individuals.

RESULTS: A significant association with HLA loci defined by variants in HLA-DQB1, HLA-DRB1, and HLA-DQA1 were …

Practice Patterns In Pediatric Cardiothoracic Presurgical Conferences: A Multicenter Survey Study., Britney Reed, Poonam Puranik, Andrew Rodenbarger, Mira Trivedi, Dilachew A. Adebo, Gary Beasley, Louis Bezold, M Jay Campbell, Michael R. Carr, Joshua Daily, Mark Debrunner, Erica Del Grippo, Carlen G. Fifer, Timothy M. Hoffman, Susan R. Hupp, Joshua D. Kurtz, Gira Morchi, Carl Owada, Renuka Peterson, Michael D. Puchalski, Ryan Romans, Arwa Saidi, Rajesh U. Shenoy, Anoop K. Singh, Robert D. Tunks, Thomas M. Yohannan, Carolyn M. Wilhelm, Jyoti K. Patel

Manuscripts, Articles, Book Chapters and Other Papers

Pediatric cardiothoracic surgeries are high-stakes, complex procedures, typically undergoing prior review at multidisciplinary conferences. This study evaluates practice patterns of conferences throughout the United States (US). Surveys were distributed to fellowship program directors or division directors in 124 US pediatric cardiology centers seeking information on conference logistics, fellow roles, quality improvement (QI), and satisfaction. All 47 responding centers (response rate 38%) conduct presurgical conferences, mostly on a weekly basis (92%) lasting 60-120 min (79%). The conferences are solely virtual (19%) or hybrid (81%). High-volume centers (> 300 surgical cases/year) are more likely to hold multiple conferences (13/20 vs 7/27, p <  0.01) and less likely to designate a moderator (11/20 vs 22/26, p = 0.027). Categorical pediatric cardiology fellows at 33 centers present clinical data (97%), echocardiograms (85%), catheterizations (82%), and cross-sectional imaging (39%), typically beginning in their first year. Most centers report that minor (98%) or major changes (51%) are made to patient management at least "sometimes." Responders rate conferences as very important (median 10/10 on a 10-point Likert scale, IQR 9-10), but satisfaction is more modest (median 7/10, IQR 7-9). Only 17% of centers have a formal QI process. Comments from 42 centers reveal positive themes of collaboration (68%) but also concerns about lengthy (30%) or inefficient (36%) discussion. Conclusions: This survey highlights common practices for pediatric cardiothoracic presurgical conferences. Conferences are collaborative and seen as highly impactful. However, satisfaction varies, and QI efforts are infrequent. These findings highlight opportunities for process improvement and standardization.

A 2-Year Randomized Trial Of Pitavastatin Calcium Vs Placebo To Treat Combined Dyslipidemia In Adolescents With Overweight And Obesity., Brian W. Mccrindle, Silva Arslanian, Michele Mietus-Snyder, Elaine M. Urbina, Adam L. Ware, Jessica E. Teng, Felicia Trachtenberg, Mark W. Russell, Amy S. Shah, Mark Cartoski, Julie A. Brothers, Christine San Giovanni, Justin P. Zachariah, Sandra Pena, William T. Mahle, Amy L. Peterson, Sheela N. Magge, Geetha Raghuveer, Binu Sharma, Valiantsina Kazlova, Craig A. Sponseller, D'Andrea Freemon, Mario Stylianou, Sarah D. De Ferranti, Pediatric Heart Network Investigators

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Combined dyslipidemia of overweight/obesity (CDO) is prevalent in youth and is associated with an increased risk of early cardiovascular disease.

OBJECTIVE: We sought to determine the impact and safety of statin therapy for CDO in adolescents.

METHODS: A double-blind, randomized trial was performed across 18 North American sites. Participants aged 10 to 19 years with body mass index ≥85th percentile and CDO defined as non-high-density lipoprotein cholesterol (non-HDL-C) ≥120 mg/dL (3.10 mmol/L) and either low HDL-C or high triglyceride:HDL-C ratio were randomized centrally to receive either pitavastatin calcium 4 mg/d or placebo for 2 years. The primary outcome was …

Malignant Transformation Of Sacrococcygeal Teratoma Versus Presacral Teratoma In Currarino Syndrome: Results Of 'The Sct-Study'., Lieke J. Van Heurn, Joep P M Derikx, Nigel J. Hall, Amr Abdelhamid Abouzeid, Simone De Campos Vieira Abib, Lohfa B. Chirdan, Shigehisa Fumino, Seong C. Kim, Oliver Muensterer, Maricarmen Olivos, Shawn D. St Peter, Jos Twisk, Nicolas Vinit, Tianyou Yang, Augusto Zani, L W Ernst Van Heurn, Sct-Study Consortium

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: The risk of malignant transformation and recurrence of Sacrococcygeal Teratoma (SCT) is relatively high, while it is possibly lower in cases associated with Currarino Syndrome (CS). However, the existing literature gives contradictory results. We aimed to examine the risk of malignant transformation in a large cohort of SCT and CS patients.

METHODS: In a global retrospective cohort study, data of consecutive SCT patients and CS patients with presacral teratoma was obtained from 132 institutes in 62 countries. Malignant transformation, defined as malignancy at initial resection, malignant recurrence, or death due to malignancy was analysed for SCT and CS patients. …

Birth-Size Reference Charts For Newborns Admitted To The Neonatal Intensive Care Units., Fu-Sheng Chou, Hung-Wen Yeh, Crystal Hsueh, Irene E. Olsen, Veeral N. Tolia, Reese H. Clark

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Our original birth-size reference charts (the Olsen charts), published in 2010 (weight, length, head circumference) and 2015 (body mass index), had limitations, including manually defined exclusion criteria and the use of completed gestational weeks. This project aimed to update the charts and address those limitations.

METHODS: We analyzed de-identified data from infants admitted to Pediatrix NICUs between 2010 and 2022. In contrast to prior work, newborns with mortality before discharge, multiple births, and congenital anomalies were included; only statistical outliers (defined as two times the interquartile range below the first quartile or above the third quartile) were excluded. Gestational …

Parent Perspectives On Neonatal Research Without Prior Consent: A Mixed-Methods Interview Study., Stephanie A. Kraft, Abigail Brickler, Abril Beretta, Rishabh Jain, Andrea Kelsh, Kaashif A. Ahmad, Justin T. Clapp, Neal W. Dickert, Rebecca A. Dorner, Katherine F. Guttmann, Anup C. Katheria, Stephanie Kukora, Benjamin A. Mooso, Elliott Mark Weiss, Fam-Connect Collaborative

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: Recruitment for clinical research in the neonatal intensive care unit (NICU) is difficult, which may lead to low enrollment rates, systematically skewed samples, and nongeneralizable results. Research without prior consent (RWPC), defined as obtaining consent only after infants have been randomized to a treatment arm, may improve enrollment but raises ethical challenges. There is a need to better understand how parents with lived experience of having an infant in the NICU consider RWPC’s impact on critical ethical values related to informed consent, including decision-making, respect, and trust. This mixed-methods study aimed to describe parental perceptions of the acceptability and …

Early Neurodevelopmental Outcomes In Children With Congenital Heart Disease., Mike Seed, Dawn Ilardi, Valerie Rofeberg, Cynthia Ortinau, Caren Goldberg, Garrett Reichle, Lauren Bush, Justin Elhoff, Amy Jo Lisanti, Jennifer Butcher, Caitlin Rollins, Andrew Van Bergen, Shabnam Peyvandi, Emily Bucholz, Stephanie Cox, Lyla Hampton, Jacqueline Sanz, Sonia Monteiro, Shruti Tewar, Kiona Allen, Caroline Lee, Kristi Glotzbach, Nneka Alexander, Laurel Bear, Corinne Anton, Renee Sananes, Linh Ly, Gina Boucher, Kelly Wolfe, Lindsay Edwards, Elizabeth J. Willen, Alexander Tan, Christina Ortega, Erica Sood, Anjali Sadhwani, Kari Crawford Plant, Lauren Quigley, Jessica Pliego, Elizabeth Valles, Abbey Hines, David Wypij, Thomas Miller

Manuscripts, Articles, Book Chapters and Other Papers

IMPORTANCE: Neurodevelopmental impairments are common in children with congenital heart disease.

OBJECTIVES: To compare neurodevelopmental outcomes by cardiac diagnosis and identify associations between medical and social factors and early neurodevelopmental outcomes among children with congenital heart disease.

DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional analysis used neurodevelopmental follow-up data obtained between May 1, 2019, and June 30, 2022, and entered into the Cardiac Neurodevelopmental Outcome Collaborative (CNOC) registry, with linkage to the Pediatric Cardiac Critical Care Consortium registry. Children younger than 30 months from 25 CNOC sites were studied. Data analysis was performed between January 2023 and December 2024.

EXPOSURES: Patients …