Medicine and Health Sciences Commons^™

Multi-Grader Validation Of The Telemedicine Retinopathy Of Prematurity Severity Score, Harrison W. Pratt, Sarthak V. Shah, Cindy S. Zhao, Arthur R. Brant, Caroline R. Baumal, Cagri G. Besirli, Audina M. Berrocal, Kimberley A. Drenser, Anna L. Ells, Clio Armitage Harper, G. Baker Hubbard, Eric D. Nudleman, Polly Quiram, Irena Tsui, Edward Wood, Yoshihiro Yonekawa, Tatiana Rosenblatt, Jochen Kumm, Darius M. Moshfeghi

Wills Eye Hospital Papers

We aimed to statefully validate Retinopathy of Prematurity (ROP) grading by evaluating intergrader variability over age-matched simulated exams. In a prospective retinal photographic grading cohort study, both eyes of twenty patients with five images per eye per visit were graded by twelve expert graders across six weekly visits. For each eye visit, ROP experts graded the Zone, Stage, and Plus, from which the Telemedicine ROP Severity Score (tROP-SS) was calculated. Graders retained knowledge of prior assessments for a given eye and followed International Classification of ROP rules. Intergrader coefficient of variation (CoV) for Zone, Stage, Plus, and tROP-SS remained below …

Natural History Of Ngly1 Deficiency: Motor Function & Clinical Features, Grace Morrison, Selina Dwight, Hal Landy, William F Mueller, Pam Ventola, Regina Deck, Becky Schweighardt, Matt Wilsey, Kevin J Lee, Bernhard Suter

Faculty, Staff and Students Publications

N-glycanase 1 (NGLY1) Deficiency is an ultra-rare neurodevelopmental disorder caused by biallelic loss-of-function mutations in the NGLY1 gene, leading to severe impairments in neurocognitive and motor function abilities in the affected patient population. Its core clinical features include global developmental delay, hyperkinetic movement disorders, elevation of liver transaminases, (hypo)alacrima, and progressive sensorimotor neuropathy. Due to the range of phenotypes and severity within the confirmed patient population, ongoing characterization of the disease is critical. A prospective natural history study (NHS) was conducted to further elucidate disease phenotypes and examine any changes in neurocognitive or motor function over a one-year period. Fifteen …

Ebp Project In A Primary, Foster Care Medical Home: Implementation Of The Ages & Stages: Social Emotional Screener, Sara Moore

2026

Background: Children in the foster care system have increased diagnoses, mental health concerns, and developmental delays.
Purpose: The pilot used the ASQ-SE to determine if the protocol was feasible and if the screener identified social-emotional difficulties in a primary care clinic that serves children in foster care. 
Method: A pilot was created, and the ASQ-SE was administered to 33 patients during well-child visits (ages 2 months-70 months) over six weeks.
Results: Implementing a social-emotional screener was feasible in the foster care primary care clinic. The infants and toddlers screened (N=33) were grouped by referral status: 57.6 % (19) …

Developing A Decision-Making Tool For Breast-Feeding Mothers Whose Babies Have A Cow's Milk Protein Allergy, Rachel M. Griffith

Human Nutrition and Hospitality Management Undergraduate Honors Theses

Cow’s milk protein allergy (CMPA) is one of the most common food allergies in infancy, affecting an estimated 2–3% of infants, including those who are breastfed. Many symptoms of CMPA overlap with gastrointestinal disorders and lactose intolerance, leading to frequent misdiagnosis and unnecessary maternal dietary restriction. Breastfeeding mothers who eliminate dairy to manage suspected CMPA often face nutritional deficiencies, emotional strain, and financial burden, while infants risk poor growth if symptoms are not properly addressed. Breastfeeding is viewed as the optimal source of nutrition for infants providing many cognitive benefits and positive maternal effects like decreased stress and risks of …

The Effects Of Sugammadex Vs. Neostigmine On Intraoperative Heart Rate In Pediatric Patients Under Two Years: A Scoping Review, Saumel Abston, Jackson Cobb, Elle Dean, Tanner Dillard, Pauline Dinh, Dwayne Accardo Dnp, Crna, Faana, Margaret Harvey Phd, Aprn, Acnp-Bc, Chfn, Fhrs

Doctor of Nursing Practice Projects

Purpose/Background

Neuromuscular blockade (NMB) reversal is a critical component of anesthesia care, particularly in infants under two years of age who have immature autonomic regulation and heightened vagal tone, predisposing them to bradycardia. Neostigmine, the traditional reversal agent, is associated with parasympathomimetic effects such as bradycardia, requiring anticholinergic co- administration. Sugammadex, a selective relaxant binding agent, offers rapid and predictable reversal of aminosteroidal neuromuscular blocking agents with less cholinergic side effects. Although the safety profile of sugammadex is well established in older pediatric populations, limited evidence exists regarding its cardiovascular effects in infants under two years of age.

Methods

A …

Population Pharmacokinetics And Dosing Simulations Of Pentobarbital In The Pediatric Population, Victoria Etges Helfer, Lorena Medina-Aymerich, William J. Muller, Marisa Meyer, Amira Al-Uzri, Russell Mcculloh, Chi D. Hornik, Stephen J. Balevic, Rachel G. Greenberg, Daniel K. Benjamin, Sarah G. Anderson, Daniel Gonzalez

Department of Pediatrics Faculty Papers

Pentobarbital is a barbiturate with sedative and anticonvulsant properties, occasionally used in pediatric patients for preoperative sedation, deep sedation during mechanical ventilation, and seizure control. Despite its long-standing clinical use, age-appropriate dosing remains challenging due to variability across studies and limited pediatric pharmacokinetic (PK) data. This study (NCT01431326) aimed to characterize the population pharmacokinetics of pentobarbital in pediatric patients (birth to 21 years) and evaluate dosing strategies using model-based simulations. A two-compartment population PK model, allometrically scaled to total body weight, adequately described pentobarbital plasma concentrations, with no additional covariates identified as significant. Simulations were conducted across four age groups: …

The Current Status Of Infant Oral Health Instruction Within Predoctoral Dental Education, Beau D Meyer, Priyanshi Ritwik, Jean Star, Timothy Followell, Mikhail Jones, Leola Royston, Brenda Bohaty, Martina Majstorovic, Adriana Modesto Gomes Da Silva, Katherine Chin, James R Boynton, Chelsea Fosse

Faculty, Staff and Student Publications

A pediatric dental home is a patient-provider relationship that establishes compassionate, comprehensive care that is continually accessible. For more than two decades, professional organizations have recommended children establish a dental home by their first birthday. In 2024, the American Academy of Pediatric Dentistry (AAPD) Council on Pre-Doctoral Education had a governance charge approved by the AAPD Board of Trustees to evaluate the status of infant oral health (IOH) instruction in pre-doctoral dental education. This study was designed to describe the current state of didactic and clinical clock hours dedicated to IOH in U.S. pre-doctoral curricula. Following IRB approval, a 25-item …

American Epilepsy Society Clinical Practice Guideline: Infantile Epilepsy., Daniel Freedman, Ifeoluwa Babatunde, Rebecca L. Morgan, Renad Abu-Sawwa, Dara Albert, Mandana Behbahani, Kevin Chapman, Erin Day Fecske, William Davis Gaillard, Monika Jones, Mary Anne Meskis, Leah Schust Myers, Kim Nye, Chima Oluigbo, Heidi H. Pfeifer, Reneé A. Shellhaas, Lindsey Thompson, Howard L. Weiner, Courtney J. Wusthoff, Elissa Yozawitz

Manuscripts, Articles, Book Chapters and Other Papers

This practice guideline from the American Epilepsy Society provides evidence-based recommendations for pharmacological, dietary, and surgical therapies for epilepsy for infants and children from 1 month of age to < 36 months. The multidisciplinary panel updated an existing systematic review, which was funded by the Patient-Centered Outcomes Research Institute and conducted by ECRI (formerly the Emergency Care Research Institute) on behalf of the Agency for Healthcare Research and Quality. The updated review used the same search strategy, inclusion/exclusion criteria, and Grading of Recommendations Assessment, Development and Education methodology, and added studies from August 2021 through September 2025 that were not in the original systematic review. As with the previous review, West syndrome and infantile spasms were excluded from this guideline, as existing treatment guidance is already available for infantile epileptic spasms. While many of the recommendations are conditional due to low certainty of evidence, the panel made two strong recommendations: (1) hemispherectomy/hemispherotomy surgery is recommended for infants and children < 36 months of age with drug resistant epilepsy secondary to select underlying lesional pathologies, including but not limited to hemimegaloencephaly, Rasmussen's encephalitis, Sturge-Weber syndrome, perinatal stroke, and hemispheric cortical dysplasia; and (2) intralobar, multilobar, or focal resections or posterior disconnections for drug-resistant focal or lesional epilepsy in this same age range. A treatment algorithm was developed based on evidence and expert opinion as part of the guideline to help place pharmacological, dietary, and surgical recommendations in a clinical context. The limited number of studies and low certainty of evidence in this population underscores the need for higher-quality data and etiology-specific treatments. More research is needed to evaluate effective therapies for infants with epilepsy, as well as the impact these therapies have on long-term developmental and mortality outcomes.

Aspirin And Preterm Birth Among Pregnant People With Increased Heat Exposure: Secondary Analysis Of A Randomized Clinical Trial, Gabriella Meltzer, Luke Duttweiler, Sarah Saleem, Kartik Shankar, Manolo Mazariegos, Antoinette Tshefu, Jackie Patterson, Elwyn Chomba, Waldemar Carlo, Shivaprasad Goudar, Richard Derman, Archana Patel, Patricia Hibberd, Edward Liechty, Fabian Essamai, Edwin Asturias, Denise Babineau, Janet Moore, Cascade Tuholske, Andrew Zimmer, Brent Coull, Elizabeth Mcclure, Robert Goldenberg, Nancy Krebs, Matthew Hoffman, Blair Wylie

Global Health Articles

IMPORTANCE: Scalable interventions are urgently needed to mitigate the adverse effects of heat on pregnancy and newborn health.

OBJECTIVE: To evaluate whether low-dose aspirin modifies the association between heat exposure and preterm birth.

DESIGN, SETTING, AND PARTICIPANTS: This secondary analysis of the Global Network for Women's and Children's Health Research Aspirin Supplementation for Pregnancy Indicated Risk Reduction in Nulliparas (ASPIRIN) randomized, double-blinded, placebo-controlled clinical trial was conducted from March 2016 to June 2018. Statistical analyses were performed from June 2024 to June 2025. The study settings included the Democratic Republic of Congo, Zambia, Kenya, Guatemala, Pakistan, and Belagavi and Nagpur, …

Regional Variation Of Underlying Kidney Diseases In Children Undergoing Chronic Kidney Replacement Therapy Around The Globe., Dagmara Borzych-Dużałka, Marjolein Bonthuis, Uma Ali, Yok-Chin Yap, Michael Manno, Yihui Zhai, Reyner Loza, Seema Hashmi, Naye Choi, Kenza Soulami, Judith Exantus, Mohamed S. Al Riyami, Sameh Mabrouk, Marbella Ma Angeles, Cristina Zelaya-Camacho, Henny Adriani Puspitasari, Syed Saimul Huque, Francisco Cano, Kar Hui Ng, Sevcan A. Bakkaloğlu, Jerome Harambat, Kitty J. Jager, Bradley A. Warady, Franz Schaefer

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: There is a scarcity of information regarding the distribution of the diseases leading to kidney failure (KF) in children living in the emerging world. We used registry data to provide a global overview of the underlying disease spectrum in children commencing kidney replacement therapy (KRT).

METHODS: We analyzed KF causes among 23,620 children and adolescents commencing maintenance KRT in 80 countries, using data from the IPNA Global KRT Registry (including ESPN/ERA Registry), the International Pediatric Dialysis Network (IPDN), the United States Renal Data System (USRDS), and the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA). The analysis considered …

Phenotypic Diversity And Outcomes In Pediatric Nmda Receptor Encephalitis: A 15-Year Retrospective Study From The Largest Children's Hospital In The United States, Alexander J Sandweiss, Timothy Erickson, Yike Jiang, Varun Kannan, Jonathan M Yarimi, Kristen S Fisher, Nikita Shukla, Tim Lotze, Eyal Muscal, Kristy O Murray

Faculty, Staff and Students Publications

Anti‐NMDAR encephalitis (NMDARE) is an autoantibody‐mediated disorder characterized by seizures, movement disorders, neurocognitive deficits, and psychosis, but the complete phenotypic heterogeneity, and outcomes are incompletely understood in children. This single‐center retrospective analysis of NMDARE at the largest pediatric hospital in the United States between 2009 and 2024 screened 115 patients diagnosed with NMDARE. 103 had sufficient clinical data available for analyses. Two‐thirds were Hispanic, disproportionate to the Houston metro area demographics, and Hispanic patients had a higher CSF white cell count and antibody titer. Approximately one‐half of the patients with idiopathic NMDARE presented with a focal cortical phenotype that localized …

Racial, Ethnic, And Neighborhood Disparities In Acute Kidney Injury In Pediatric Acute Leukemia, Wendy C Bravo, Yimei Li, Tamara P Miller, Kelly Getz, Lusha Cao, Edward Krause, Mark Ramos, Judy Lee, Maria Monica Gramatges, Karen R Rabin, Michael Scheurer, Richard Aplenc, Michelle Denburg

Faculty, Staff and Students Publications

Introduction: We sought to identify racial/ethnic and neighborhood disparities in acute kidney injury (AKI) in children with acute lymphoblastic or myeloid leukemia (ALL, AML).

Methods: Electronic health record data were retrospectively collected from patients treated for de novo pediatric ALL or AML in the multicenter Leukemia Electronic Abstraction of Records Network. AKI was defined by modified Kidney Disease Improving Global Outcomes criteria. Neighborhood-level resources were defined by the Child Opportunity Level (COL). Prevalence ratios (PRs) for AKI at diagnosis by race/ethnicity and COL were calculated using modified Poisson regression. Cox regression was used to calculate hazard ratios (HRs) of first …

Interplay Between Genetic Ancestry, Self-Reported Race And Ethnicity, And Clinical Factors In Pediatric Acute Lymphoblastic Leukemia: A Redial Consortium Report, Pragati Kore, Jennifer M Geris, Maria Leon-Camarena, Maria I Castellanos, Olga A Taylor, Veronica Garcia-Morales, Austin L Brown, Pagna Sok, Jeremy M Schraw, Van Huynh, Kathleen F Ludwig, Laura J Klesse, Sandi L Pruitt, Amy E Hughes, Kevin Tien, Kenneth M Heym, Timothy Griffin, Rodrigo Erana, Juan Carlos Bernini, Maria M Gramatges, Elizabeth G Atkinson, Philip J Lupo, Michael E Scheurer, Karen R Rabin

Faculty, Staff and Students Publications

Background: Pediatric acute lymphoblastic leukemia (ALL) is the most common cancer in children, and its incidence and outcomes vary by race and ethnicity.

Methods: The Reducing Ethnic Disparities in Acute Leukemia (REDIAL) Consortium has assembled a cohort of patients < 25 years at diagnosis to examine genetic and neighborhood-level factors influencing ALL. As the cohort is ongoing, for this report, we examined sociodemographic and cytogenetic factors that might be associated with ALL outcome disparities.

Results: Among 2,512 patients diagnosed between 2005 and 2020, we observed distinct patterns of genetic ancestry and residential characteristics across self-reported race and ethnicity. Latino children, who comprised 55.3% of the cohort, had a mean Amerindigenous ancestry proportion of 50.9%, whereas non-Latino White children exhibited a predominantly European ancestry (mean = 78%). Neighborhood-level analysis revealed significant socioeconomic and geographic differences by …

Risk Factors For The Development Of Food Allergy In Infants And Children: A Systematic Review And Meta-Analysis, Nazmul Islam, Alexandro W L Chu, Falana Sheriff, Farid Foroutan, Gordon H Guyatt, Romina Brignardello-Petersen, Paul Oykhman, Alfonso Iorio, Ariel Izcovich, Katherine M Morrison, Yetiani Roldan Benitez, Rachel J Couban, Dorota Borovsky, Yiming Zhang, Leonardo Ologundudu, Keerthana Pasumarthi, Syed Fahad Farooq, Kyle Tong, Wang-Choi Tang, Haseeb Faisal, Muhammad Faran Khalid, Mohammad Saad Asif, Shannon French, Susan Waserman, R Sharon Chinthrajah, Hugh A Sampson, S Shahzad Mustafa, Jay A Lieberman, Kirsi M Järvinen, Sally Bailey, Philippe Bégin, Scott H Sicherer, Jennifer Gerdts, Melanie Carver, Lynda Mitchell, Kelly Cleary, Matthew J Greenhawt, Julie Wang, Aikaterini Anagnostou, Marcus S Shaker, Anita Chandra-Puri, Patricia C Fulkerson, Robert A Wood, Derek K Chu

Faculty, Staff and Students Publications

Importance: The incidence and risk (predictive) factors for early life food allergy development remain uncertain.

Objective: To estimate the incidence and quantify risk factors for food allergy development.

Data sources: MEDLINE and Embase were systematically searched to January 1, 2025. Data were analyzed from June 1, 2025, to November 25, 2025.

Study selection: Incidence estimates included studies confirming food allergy via food challenge. Risk factor analyses included cohort, case-control, and cross-sectional studies in any language assessing children younger than 6 years using multivariable analyses.

Data extraction and synthesis: Paired reviewers independently extracted data. Random-effects meta-analyses pooled incidence and adjusted odds …

Optical Coherence Tomography As An Emerging Technique For Identifying Pediatric Middle Ear Effusion, Roger Neuberger, Jeffrey Carter, Adriana Dives, Ana Sofia C Ibarrola, Maritsa Ixba, Elton Lambert, Yi-Chun Liu, Anna H Messner

Faculty, Staff and Students Publications

Objective: Acute otitis media (AOM) and otitis media with effusion (OME) rely on accurate characterization of middle ear effusion (MEE). Optical coherence tomography (OCT) is a potential modality for noninvasive analysis of MEE, thereby assisting with otitis media diagnosis. This study aims to compare the diagnostic performance of OCT with otoscopy and tympanometry in pediatric patients.

Methods: A prospective convenience sample of 164 pediatric patients aged 6 months to 12 years was recruited from two tertiary care pediatric otolaryngology clinics. During their visit, each child underwent otoscopy, tympanometry, and OCT evaluation. Scans were reviewed by both a fellowship-trained pediatric otolaryngologist …

Derivation And Validation Of The Pediatric Community-Acquired Pneumonia Severity (Pedcaps) Score: A Prospective Cohort Study, Todd A Florin, Ron Reeder, Lilliam Ambroggio, Richard M Ruddy, Samir S Shah, Allison Cator, Matthew J Lipshaw, Geoffrey A Capraro, Laura F Sartori, Amy Y Cheng, Leah Tzimenatos, Patrick S Walsh, Claudia R Morris, Chris A Rees, Son H Mclaren, Tamar R Lubell, Chari D Larsen, Justin Moher, Eileen J Klein, Shubhada Hooli, Nathan Kuppermann

Faculty, Staff and Students Publications

Introduction: Community-acquired pneumonia (CAP) is a frequent and costly cause of pediatric emergency department (ED) visits and hospitalizations. Previous prognostic tools for CAP are limited by small samples, single-center or retrospective designs, lack of generalizability to ED settings, lack of biomarkers, or limited objective data. To overcome these limitations, we will derive and externally validate a prediction rule for pediatric CAP severity in a large, multicenter prospective cohort.

Methods: This is a prospective cohort study of children 3 months to 18 years old with CAP who present to EDs within the Pediatric Emergency Care Applied Research Network. Enrollment began 8/2023 …

The Impact Of Tracheal Intubation Attempts On Chest Compression Fraction During Pediatric Cpr: A Report From The Videography In Pediatric Resuscitation (Viper) Collaborative, Theerapon Jariyasakoolroj, Karen O'Connell, Thomas Macdonald, John Breslin, Jennifer Murphy, Crystal Macdonald, Tara Neubrand, Laura Rochford, Sage Myers, Benjamin Kerrey, Aaron Donoghue

Faculty, Staff and Students Publications

Aim: To examine the association between tracheal intubation (TI) attempts and chest compression (CC) pauses on chest compression fraction (CCF) during pediatric CPR across a network of emergency departments.

Methods: Prospective observational cohort by the Videography in Pediatric Resuscitation (VIPER) Collaborative. Videorecorded CPR events were reviewed to measure CC pauses and characterize TI attempts. CCF was calculated as the proportion of time compressions were delivered during each event. Events were categorized based on whether TI-associated pauses occurred, and CCF was compared using Wilcoxon rank-sum testing.

Results: A total of 183 CPR events were included. The median event duration was 971 …

Operative Versus Non-Operative Management Of Infant Perianal Abscesses: A Pediatric Surgery Research Collaborative Prospective Quality Improvement Study, Leigh Selesner, Chakshu Soni, Romeo C. Ignacio, Rimla Khan, Robert Wright, Alicia Mcintire, Bethany J. Slater, Nathan M. Novotny, Ryan T. Davis, Artem F. Dadamyan

Conference Presentation Abstracts

Abstract: Purpose Treatment of infant perianal abscesses (IPA) remains controversial, with ongoing debate between operative and non-operative management. Recurrence is common and prospective data to guide care are lacking. We performed the first multi-institutional prospective quality improvement (QI) study comparing non-operative to operative IPA management. Methods The primary endpoint was time to complete abscess resolution. Secondary endpoints included surgical intervention (incision and drainage ± fistulotomy) and abscess recurrence. Institutions were recruited through a national research collaborative. IRB approval was obtained individually. Between 2022 and 2025, we prospectively enrolled patients < 1 year of age with an abscess ≤2 cm from the anal verge. Patients with predisposing conditions (e.g. inflammatory bowel disease) were excluded. Management was determined by the treating provider, with either upfront surgical intervention (control group) or non-operative care per our QI protocol (protocol group, Figure 1). Data were collected on management prior to surgical evaluation, presentation, subsequent treatment and outcomes. Statistical analyses were performed using STATA, with p < 0.05 considered significant. Endpoints were compared between groups by non-parametric methods, with denominators based on available data. Results Fourteen institutions participated across the U.S., with a total of 288 patients (108 control, 180 protocol) enrolled. Median follow-up was 0.99 (interquartile range 0.23-3.93) and 1 (0.16-4.56) months for control and protocol groups. Abscess resolution occurred in 155 patients during follow-up (36/71 (51%) control, 119/134 (89%) protocol, p < 0.01). Median time to abscess resolution was 1.21 (0.33-4) and 1.13 (0.57-3.83) months for control and protocol groups (p=0.64). Recurrences were frequent in both cohorts (34/93 (37%) control, 62/153 (41%) protocol). Surgical intervention was significantly more common in the control group: incision and drainage were performed in 61/107 (57%) versus 19/166 (11%) and exam under anesthesia with fistulotomy in 31/106 (29%) versus 20/166 (12%) (both p< 0.01). Conclusions Time to abscess resolution was similar between patients treated with upfront surgical intervention and non-operative management according to our QI protocol. Significantly more patients underwent surgical intervention in the control group, without an impact on time to resolution. Our data support initial non-operative management of infant perianal abscesses, emphasizing antibiotics at initial presentation, sitz baths and family reassurance. Abbreviations: IPA - infant perianal abscess; QI - quality improvement; IRB - institutional review board

Computational Fluid Dynamics-Based Risk Stratification Of Modified Blalock-Taussig-Thomas Shunt Thrombogenicity, Yi Qiao, Ethan Penn, Jacob Miller, Scott Bugenhagen, Ram Rohatgi, Kelsey Mercer, Blaire Kulp, Jinli Wang, Pirooz Eghtesady, Guy M Genin, Edon J Rabinowitz, David Bark

2020-Current year OA Pubs

BACKGROUND: The modified Blalock-Taussig-Thomas shunt (mBTTS) is a critical palliative procedure for infants with single-ventricle physiology, but thrombosis-related occlusion affects 8% to 12% of infants and carries nearly 50% mortality. Meanwhile, existing antithrombotic strategies fail to address the hemodynamic factors driving thrombosis, highlighting the need for a deeper understanding of flow dynamics in shunt failure.

OBJECTIVES: This study aims to identify how mBTTS geometry influences hemodynamics and thrombosis risk, providing quantitative guidance for surgical planning and shunt design optimization.

METHODS: We used patient-specific imaging data to test 54 idealized mBTTS configurations, systematically varying key geometric factors: pulmonary artery diameter, shunt …

High Concordance Of Physician-Attestation With Manual Data Abstraction For Sickle Cell Type: An Ash Rc Data Hub Study, Alexis Thompson, Ashima Singh, Donna Neuberg, Amanda Brandow, Allison King, Sophie Lanzkron, Emily Semmel, Sam Walters, Susan Rogers, Kathleen Torres, William Wood

Cardeza Foundation for Hematologic Research

Sickle cell disease (SCD) is the most common inherited blood disorder in the United States. The American Society of Hematology Research Collaborative (ASH RC) has built an SCD Data Hub (DH) to facilitate research and quality improvement using real-world data. To our knowledge, we report here the first analyses from the DH, focusing on cohort demographics and accurate identification of SCD diagnosis type. DH sites have data use agreements with ASH RC to extract and transfer electronic health record (EHR) data at least quarterly. Principal investigators (PI) provided additional attestation of SCD diagnosis based on existing local data sources deemed …

Identifying Delays Impacting Maternal And Perinatal Deaths Using A Facility-Based Death Audit Review System Integrated With Community Engagement: A Mixed Methods Study, Zahid Memon, Wardah Ahmed, Shah Muhammad, Sajid Soofi, Shanti Chouhan, Arjumad Rizvi, Paul Barach, Zulfiqar A. Bhutta

College of Population Health Faculty Papers

BACKGROUND: Pakistan's persistently high maternal (178 per 100 000 livebirths) and neonatal (41 per 1000 livebirths) mortality ratios are compounded by lack of reliable data on the root causes and preventable risk factors, which hinders their effective use in improving care and progress toward safe, high-quality services. We sought to identify system delays impacting maternal and perinatal deaths using a facility-based death audit review system integrated with community engagement for implementing actionable solutions.

METHODS: We used a mixed methods, concurrent parallel study design at three secondary level healthcare facilities in District Matiari, Sindh, Pakistan. We reviewed 319 cases that included …

Advancing Caregiver Support In Community-Based Care: Advocacy, Resources, And Education Supporting Nicu Transition And Families With Complex Needs, Leah G. Rickard-Breeden

OTD Capstone Projects

This capstone project was completed in partnership with Nurses for Newborns (NFN), a nonprofit organization that is seeking to improve maternal and infant health outcomes across Middle Tennessee through free, in-home nursing visits. They provide education, health assessments, and connections to community resources for prenatal and postpartum mothers and their infants; specifically, those facing medical, emotional, or social barriers. The focus of this project was to create a comprehensive resource to support caregivers of infants through their transition from the NICU to home. A needs assessment revealed that families would benefit from additional support and resources to help bridge the …

Enhanced Dietary Monitoring Using Fecal Genomics For Childhood Malnutrition Interventions, Ammara Aqeel, Najeeha T Iqbal, Sanam Iram Soomro, Sheraz Ahmed, Teresa K Mcdonald, Olivia Osborne, Sharon Jiang, Nolan Ives, Kazi Ahsan, Fayaz Umrani, Michael J Barratt, Jeffrey I Gordon, Syed Asad Ali, Lawrence A David

2020-Current year OA Pubs

Ready-to-use therapeutic and supplementary foods (RUTF/RUSF) are a primary treatment for childhood malnutrition in Community Management of Acute Malnutrition (CMAM) programs. However, measuring intervention compliance is labor intensive and unreliable. We applied FoodSeq, a fecal genomic dietary assessment biomarker, in malnourished infants (3-15 months) from Matiari, Pakistan. FoodSeq identified a significant increase in the abundance of DNA from chickpea, a primary RUSF ingredient, during RUSF administration and captured region-specific complementary feeding practices, including age-inappropriate feeding practices such as wide-spread tea consumption. Our findings highlight the potential of dietary genomics as an empirical and scalable tool for compliance monitoring and dietary …

Understanding Post-Nicu Caregiver Mental Health And Occupational Participation: Implications For Healthcare Practice, Emily S. Knight

Student Capstone Papers

This capstone project explored the mental health challenges experienced by caregivers following their infant’s discharge from the neonatal intensive care unit (NICU) and the resulting impact on occupational participation. Using a mixed-methods design, data was collected through an anonymous survey of 46 post-NICU caregivers, incorporating both quantitative and qualitative responses. Findings revealed that caregivers commonly experienced significant mental health concerns, including stress, anxiety, and depressive symptoms, particularly within the first year following discharge. Although results demonstrated a statistically significant improvement in mental health over time, many caregivers reported limited access to mental health resources and professional support. Importantly, the study …

Holding Hope: Empowering Parents Through Perinatal And Nicu Palliative Care, Huntington N. Cotten

Entry-Level Occupational Therapy Doctorate - Doctoral Capstone Symposium

Families receiving perinatal and neonatal Palliative Care (PC) services can experience significant emotional and practical challenges while caring for a child with medical complexities. The Care Companion, a family centered, educational resource, was created in response to survey findings indicating that rehabilitation therapists (OT, PT, and SLP) encountered challenges in providing PC services, followed by site‑specific insights that highlighted additional gaps in family support, education, and parent–infant bonding. This Occupational Therapy (OT) Capstone project was completed within a large academic pediatric medical center providing interdisciplinary PC services to families whose infants have been diagnosed with serious, life‑limiting conditions. The purpose …

Understanding Post-Nicu Caregiver Mental Health And Occupational Participation: Implications For Healthcare Practice, Emily S. Knight, Zeida Gutierrez, Maureen Fischer

Spring 2026 OTD Capstone Symposium

This capstone project explored the mental health challenges experienced by caregivers following their infant’s discharge from the neonatal intensive care unit (NICU) and the resulting impact on occupational participation. Using a mixed-methods design, data was collected through an anonymous survey of 46 post-NICU caregivers, incorporating both quantitative and qualitative responses. Findings revealed that caregivers commonly experienced significant mental health concerns, including stress, anxiety, and depressive symptoms, particularly within the first year following discharge. Although results demonstrated a statistically significant improvement in mental health over time, many caregivers reported limited access to mental health resources and professional support. Importantly, the study …

Growth Failure And Early Recurrence In Congenital Diaphragmatic Hernia: An International Cohort Study, Rachel C Bordelon, Kylie I Holden, Charles C Miller, Ashley H Ebanks, Kevin P Lally, Matthew T Harting, Allison L Speer, Representing The Congenital Diaphragmatic Hernia Study Group

Faculty, Staff and Student Publications

Purpose: The primary objective was to determine whether growth failure (GF) is associated with early recurrence in congenital diaphragmatic hernia (CDH). The secondary objective was to characterize the prevalence and severity of GF in CDH survivors.

Background: GF is common among CDH survivors, yet it is unclear how growth challenges affect overall morbidity, including hernia recurrence. CDH-specific nutritional guidelines include high calorie and protein targets during periods of acute illness but may benefit from clarifying the relationship between growth and adverse outcomes in this population.

Methods: This multicenter cohort study retrospectively analyzed prospectively collected data from the CDH Study Group …

Associations Between Sociodemographic Predictors And Age Of Referral For Autism Spectrum Disorder (Asd) Diagnosis Since The Beginning Of The Covid-19 Pandemic, Mallika Mathur, Ruosha Li, Sandra Mckay, Christine Markham, Deepali K Ernest, Shreela Sharma

Faculty, Staff and Student Publications

Purpose: Sociodemographic characteristics, such as race and ethnicity, are associated with delays in ASD diagnosis. However, limited literature has examined the characteristics associated with delayed diagnosis since the start of the COVID-19 pandemic. This study aimed to identify the individual and aggregate sociodemographic characteristics associated with the age at which a child receives a referral for a diagnosis (from March 2020 to May 2023) and evaluate the impacts of the pandemic on this association.

Methods: Using cross-sectional data obtained from patients' electronic health records and the U.S. Census Bureau, we examined associations using linear regressions (N = 507). A subgroup …

Factors Associated With Child Protective Services Referrals In Young Children With Isolated Skull Fractures., Karli Breeden-Carino, Joanne N. Wood, Cindy W. Christian, Tagrid M. Ruiz-Maldonado, Daniel M. Lindberg, Angela Bachim, Lori Frasier, Terra N. Frazier, Nancy S. Harper, Sara E. Kruczek, Farah Brink, Jennifer E. Wolford, Jan Leonard, M Katherine Henry

Manuscripts, Articles, Book Chapters and Other Papers

OBJECTIVE: Many young children with isolated skull fractures are referred to child protective services (CPS) despite being assessed to have a low likelihood of abuse. We sought to identify factors associated with CPS referrals in this population and to quantify hospital-level variation.

METHODS: We performed a multicenter retrospective cross-sectional study of children < 2 years with skull fractures with or without a small underlying intracranial hemorrhage (ICH) and no additional injuries undergoing a child abuse pediatrics (CAP) subspecialty evaluation. We explored associations between demographic factors, clinical characteristics, psychosocial risk factors, and hospital site with CPS referral status. We performed multivariable logistic regression, adjusting for transfer status and all significant covariates from unadjusted analyses. We utilized marginal standardization to calculate the estimated probability of CPS referrals at each site, adjusting for all factors in the final model.

RESULTS: Of 528 children, 303 (57.4%) were referred to CPS, with 86.5% referred before CAP consultation. In multivariable logistic regression, presence of psychosocial risk factors (OR 4.00; 95% CI 2.25, 7.11), in-person CAP consult (OR 3.93; 1.61, 9.62), inflicted or no trauma history provided (OR 6.15; 3.30, 11.45), …

Hepatitis C Virus Testing In Perinatally Exposed Children, Rachel L Epstein, Sarah Munroe, Elizabeth A Erdman, Amy Bettano, Megan R Curtis, Laura White, Elisha M Wachman, Anthony Osinski, Alexander Y Walley, Benjamin P Linas

2020-Current year OA Pubs

IMPORTANCE: Despite rising hepatitis C virus (HCV) incidence in pregnant people, studies demonstrate that fewer than 50% of perinatally exposed infants receive HCV testing. Few studies report treatment of infected infants or factors affecting testing.

OBJECTIVE: To identify birthing parent and child factors associated with appropriate HCV testing for perinatally exposed infants and characterize HCV care for children with HCV.

DESIGN, SETTING, AND PARTICIPANTS: This cohort study included records on testing, care, and treatment for Massachusetts children perinatally exposed to HCV between 2014 and 2021 from a statewide health database linking statewide vital statistics, infectious disease surveillance data, substance use …