pediatric research

Editor's Choice: JAMA Pediatrics —The Year in Review, 2023

Sara B. Johnson, PhD, MPH; Molly Kuehn, MD; Jennifer O. Lambert, MD, MHS; et al

Original Investigation | April 22, 2024

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• Physical Fitness and Risk of Mental Disorders in Children and Adolescents Huey-Ling Chiang, MD, PhD; et al. Original Investigation online first Huey-Ling Chiang, MD, PhD; et al.
• Identification of Human-Generated vs AI-Generated Abstracts Dennis Ren, MD; et al. Research Letter online first Dennis Ren, MD; et al.
• Developmental Milestone Attainment in US Children Before and During the COVID-19 Pandemic Sara B. Johnson, PhD, MPH; et al. Original Investigation online first Sara B. Johnson, PhD, MPH; et al.
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• Recreational Cannabis Legalization and Adolescents Rebekah Levine Coley, PhD; et al. Research Letter online first Rebekah Levine Coley, PhD; et al.
• Implications of Health Equity for Children With Disabilities Kara B. Ayers, PhD; et al. Viewpoint online first Kara B. Ayers, PhD; et al.
• Implications of a Biological Poverty Line for Infants Joan L. Luby, MD; et al. Viewpoint online first Joan L. Luby, MD; et al.
• Neonatal Phototherapy—The Need to Measure and Document Michael A. Goldenhersh, MD; et al. Viewpoint online first Michael A. Goldenhersh, MD; et al.
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Page 1 of 114

The effect of vitamin D status on the occurrence of Kawasaki Disease: a meta-analysis

The relationship between vitamin D status and Kawasaki Disease (KD), as well as coronary artery lesion (CAL), has yet to be established.

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Feeding characteristics and growth among children with prenatal exposure to Zika virus with and without microcephaly in the microcephaly epidemic research group pediatric cohort

To describe the feeding characteristics and growth of children with prenatal exposure to Zika virus (ZIKV) from birth to 48 months.

Semaphorin 7A promotes endothelial permeability and inflammation via plexin C1 and integrin β1 in Kawasaki disease

Kawasaki disease (KD) is a pediatric systemic vasculitis characterized by endothelial cell dysfunction. Semaphorin 7A (Sema7A) has been reported to regulate endothelial phenotypes associated with cardiovascula...

The relationship between changes in peak expiratory flow and asthma exacerbations in asthmatic children

Asthma is one of the most common chronic airway diseases in children. Preventing asthma exacerbation is one of the objectives of all asthma action plans. In patients with poor perception, it is difficult to id...

The effect of exercise on sleep habits of children with type 1 diabetic: a randomized clinical trial

Adequate sleep and exercise are important components of the human lifestyle. Paying attention to these two factors is very important to improve the condition of children with type 1 diabetes. Therefore, this s...

The Minhang Pediatric Biobank cohort study: protocol overview and baseline characteristics

Little has been done to establish biobanks for studying the environment and lifestyle risk factors for diseases among the school-age children. The Minhang Pediatric Biobank (MPB) cohort study aims to identify ...

A therapeutic ERCP in an only 5.9 kg infant with obstruction jaundice using JF-260V duodenoscope

Endoscopic retrograde cholangiopancreatography (ERCP) has found extensive use in pediatric patients; however, challenges persist in the application of therapeutic ERCP in infants.

A novel pyroptosis-related gene signature exhibits distinct immune cells infiltration landscape in Wilms’ tumor

Wilms’ tumor (WT) is the most common renal tumor in childhood. Pyroptosis, a type of inflammation-characterized and immune-related programmed cell death, has been extensively studied in multiple tumors. In the...

Plummer–Vinson syndrome: a rare occurrence in paediatrics

Plummer–Vinson syndrome (PVS) is characterized by a triad of symptoms consisting of microcytic hypochromic anaemia, oesophageal webs, and dysphagia. PVS is commonly found in women in the fourth and fifth decad...

Comparison of neurally adjusted ventilatory assist and synchronized intermittent mandatory ventilation in preterm infants after patent ductus arteriosus ligation: a retrospective study

This study aimed to compare the efficacy of neurally adjusted ventilatory assist (NAVA) to synchronized intermittent mandatory ventilation (SIMV) in preterm infants requiring mechanical ventilation after paten...

Effectiveness of BNT162b2 COVID-19 primary series vaccination in children aged 5–17 years in the United States: a cohort study

COVID-19 vaccines are authorized for use in children in the United States; real-world assessment of vaccine effectiveness in children is needed. This study’s objective was to estimate the effectiveness of rece...

Irisin combined index to diagnose central precocious puberty in girls: a cross-sectional study

To investigate serum irisin levels in girls at different developmental status and explore the significance of irisin for the diagnosis of central precocious puberty (CPP) in girls.

Correction: Individualized estimation of arterial carbon dioxide partial pressure using machine learning in children receiving mechanical ventilation

The original article was published in BMC Pediatrics 2024 24 :149

Identifying the most representative actigraphy variables reflecting standardized hand function assessments for remote monitoring in children with unilateral cerebral palsy

Accurate assessment of physical activity and motor function in children with cerebral palsy is crucial for determining the effectiveness of interventions. This study aimed to investigate the correlation betwee...

The current clinical landscape of neonatal respiratory failure in Jiangsu Province of China: patient demographics, NICU treatment interventions, and patient outcomes

Neonatal respiratory failure (NRF) is a serious condition that often has high mortality and morbidity, effective interventions can be delivered in the future by identifying the risk factors associated with mor...

Identification of a novel GNAS mutation in a family with pseudohypoparathyroidism type 1A

Pseudohypoparathyroidism (PHP) is caused by loss-of-function mutations at the GNAS gene (as in the PHP type 1A; PHP1A), de novo or inherited at heterozygous state, or by epigenetic alterations at the GNAS locus (...

Comparison of the efficacy of parent-mediated NDBIs on developmental skills in children with ASD and fidelity in parents: a systematic review and network meta-analysis

Recently, studies on behavioral interventions for autism have gained popularity. Naturalistic Developmental Behavior Interventions (NDBIs) are among the most effective, evidence-based, and widely used behavior...

Control of blood pressure in hypertensive children and adolescents assessed by ambulatory blood pressure monitoring

There have been few studies evaluating the control of hypertension (HT) in children. This study aimed to assess the control of HT using ambulatory blood pressure monitoring (ABPM) and to compare the parameters...

Parents’ and neonatal healthcare professionals’ views on barriers and facilitators to parental presence in the neonatal unit: a qualitative study

Parent and infant separation in the neonatal unit is associated with adverse health outcomes. Family-integrated care has several advantages and the potential to reduce these adverse outcomes but requires paren...

Association between quality and quantity of carbohydrate intake with selected anthropometric indices among primary school girls in Kerman city, Iran: a cross-sectional study

The school-age is a crucial period of physical and cognitive growth, which requires an assessment of dietary intake and its influence on body weight and height. This study aims to determine the association bet...

Spatial disparity and associated factors of diarrhea among under-five children in Rwanda: a multilevel logistic regression analysis

Diarrhea, defined as three or more loose stool per day, is a major cause of child mortality. Exploring its spatial distribution, prevalence, and influencing factors is crucial for public health decision and ta...

Analysis and prediction of nutritional outcome of patients with pediatric inflammatory bowel disease from Bahrain

Inflammatory bowel disease (IBD) is a chronic gastrointestinal disease that causes anorexia, malabsorption, and increased energy requirements. Childhood IBD can significantly impact nutritional status and futu...

Incidental finding of thyroglossal duct cyst in a neonate during endotracheal intubation: a case report

Thyroglossal Duct Cyst (TDC) is a common lesion of the midline neck, originating from an incomplete involution of the thyroglossal duct. It is typically observed in pre-scholar patients and surgery is the trea...

Evidence-based recommendations for delivering the diagnosis of X & Y chromosome multisomies in children, adolescents, and young adults: an integrative review

The diagnosis of supernumerary X & Y chromosome variations has increased following the implementation of genetic testing in pediatric practice. Empirical evidence suggests that the delivery of the diagnosis ha...

The impact of combined administration of surfactant and intratracheal budesonide compared to surfactant alone on bronchopulmonary dysplasia (BPD) and mortality rate in preterm infants with respiratory distress syndrome: a single-blind randomized clinical trial

Respiratory distress syndrome (RDS) is one of the most important and common disorders among premature infants.

Association between body mass index and tic disorders in school-age children

To explore the relationship between body mass index (BMI ) and the severity of tic disorders (TDs) in children 6–14 years old.

Determinants of externally visible birth defects among perinatal deaths at Adama Comprehensive Specialized Hospital: a case-control study

Birth defects (BDs) are the major causes of infant morbidity and mortality in both developed and developing countries. Regardless of their clinical importance, few studies on predisposing factors have been con...

Correlation of gestational age and age at death in sudden infant death syndrome: another pointer to the role of critical developmental period?

Filiano and Kinney proposed a triple-risk model for the sudden infant death syndrome (SIDS) that involves the intersection of three risks: (1) a vulnerable infant, (2) a critical developmental period in homeos...

Evaluating a web-based training curriculum for disseminating best practices for the care of newborns with neonatal opioid withdrawal syndrome in a rural hospital, the NOWS-NM Program

The incidence of neonatal opiate withdrawal syndrome (NOWS) in the US has grown dramatically over the past two decades. Many rural hospitals not equipped to manage these patients transfer them to hospitals in ...

Seizures in febrile children with SARS-CoV-2 infection: clinical features, short-term follow-up

As the Omicron variant of the Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) emerges, the neurological manifestations correlated with this epidemic have garnered increasing attention. This study ...

The effect of maternal voice and non-nutritional sucking on repeated procedural pain of heel prick in neonates: a quasi-experimental study

Neonates in the neonatal intensive care unit undergo frequent painful procedures. It is essential to reduce pain using safe and feasible methods.

Nomogram for predicting early hypophosphatemia in term infants

Physiological processes rely on phosphate, which is an essential component of adenosine triphosphate (ATP). Hypophosphatasia can affect nearly every organ system in the body. It is crucial to monitor newborns ...

Critically ill children with SARS-COV-2 Omicron infection at a national children medical center, Guangdong, China

SARS-CoV-2 infection is described as asymptomatic, mild, or moderate disease in most children. SARS-CoV-2 infection related death in children and adolescents is rare according to the current reports. COVID-19 ...

Systemic lupus erythematosus combined with Wilson’s disease: a case report and literature review

Systemic lupus erythematosus (SLE) and Wilson’s disease (WD) are both systemic diseases that can affect multiple organs in the body. The coexistence of SLE and WD is rarely encountered in clinical practice, ma...

The effect of respiratory muscle training on children and adolescents with cystic fibrosis: a systematic review and meta-analysis

Cystic fibrosis is a chronic genetic disease that can affect the function of the respiratory system. Previous reviews of the effects of respiratory muscle training in people with cystic fibrosis are uncertain ...

Association between dietary selenium and zinc intake and risk of dilated cardiomyopathy in children: a case-control study

Dilated cardiomyopathy (DCMP) is characterized by the enlargement and weakening of the heart and is a major cause of heart failure in children. Infection and nutritional deficiencies are culprits for DCMP. Zin...

The timing of minimally invasive surgery for prenatally diagnosed choledochal cysts

There are no clear evidence-based recommendations concerning when patients with prenatally diagnosed choledochal cysts (CCs) should undergo surgery. This study was primarily designed to explore the proper timi...

Delineating morbidity patterns in preterm infants at near-term age using a data-driven approach

Long-term survival after premature birth is significantly determined by development of morbidities, primarily affecting the cardio-respiratory or central nervous system. Existing studies are limited to pairwis...

Predicting chronological age of 14 or 18 in adolescents: integrating dental assessments with machine learning

Age estimation plays a critical role in personal identification, especially when determining compliance with the age of consent for adolescents. The age of consent refers to the minimum age at which an individ...

Resistance training presents beneficial effects on bone development of adolescents engaged in swimming but not in impact sports: ABCD Growth Study

Sports practice during adolescence is important to enhance bone development, although it may provide different effects depending on the mechanical impact present in the sport. Besides, resistance training (RT)...

Chronic stridor in a toddler after ingestion of a discharged button battery: a case report

Button battery (BB) ingestions (BBI) are increasingly prevalent in children and constitute a significant, potentially life-threatening health hazard, and thus a pediatric emergency. Ingested BBs are usually ch...

Antibiotic use in infants at risk of early-onset sepsis: results from a unicentric retrospective cohort study

Antibiotic use for early-onset sepsis represents a high percentage of antibiotic consumption in the neonatal setting. Measures to assess infants at risk of early-onset sepsis are needed to optimize antibiotic ...

Growth and endocrinopathies among children with β-Thalassemia major treated at Dubai Thalassemia centre

β-Thalassemia major (BTM) is one of the most common hereditary anemias worldwide. Patients suffer from iron overload that results from repeated blood transfusion This in turn leads to multiple organ damage and...

Cholangiocarcinoma identified in perforated choledochal cyst in a 3-year-old boy

Cholangiocarcinoma in patients with Choledochal cysts is rare in childhood; however, it seriously affects the prognosis of the disease. The key to addressing this situation lies in completely removing the extr...

Epidermolysis Bullosa: Two rare case reports of COL7A1 and EBS-GEN SEV KRT14 variants with review of literature

Bullosa is a rare hereditary skin condition that causes blisters. Genes encoding structural proteins at or near the dermal-epidermal junction are mutated recessively or dominantly, and this is the primary caus...

Reconstitution of oral antibiotic suspensions for paediatric use in households: a cross-sectional study among caregivers of 3–5-year-old children from a selected district, Sri Lanka

Reconstitution of oral pediatric antibiotic suspension by primary caregivers plays an essential role in determining the overall health outcome of the child. Incorrect reconstitution techniques could lead to un...

Erythroferrone and hepcidin levels in children with iron deficiency anemia

Iron deficiency anemia remains a significant public health issue in developing countries. The regulation of iron metabolism is primarily controlled by hepcidin, a key regulatory protein. During erythropoiesis,...

Effect of play-based intervention on children’s mental status and caregiver involvement during hospitalization: findings from Pakistan

The nurturing care framework (NCF) encompasses responsive caregiving, health, nutrition, safety and security by parents and other caregivers. It improves health, development and wellbeing of children. A hospit...

Predictors of neonatal mortality among neonates admitted to the neonatal intensive care unit at Hawassa University Comprehensive Specialized Hospital, Sidama regional state, Ethiopia

Despite promising efforts, substantial deaths occurred during the neonatal period. According to estimates from the World Health Organization (WHO), Ethiopia is among the top 10 nations with the highest number ...

Clinical characteristics analysis of pediatric spinal cord injury without radiological abnormality in China: a retrospective study

This study aims to analyze the clinical characteristics of Chinese children with spinal cord injury (SCI) without radiographic abnormality (SCIWORA) and explore their contributing factors and mechanisms of occ...

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The state and future of pediatric research—an introductory overview

Esther m. speer.

1 Department of Pediatrics, Renaissance School of Medicine at Stony Brook University, Stony Brook, NY USA

Lois K. Lee

2 Department of Pediatrics, Boston Children’s Hospital, Harvard Medical School, Boston, MA USA

Florence T. Bourgeois

3 Computational Health Informatics Program, Boston Children’s Hospital, Boston, MA USA

Daniel Gitterman

4 Public Policy, University of North Caroline, Chapel Hill, NC USA

William W. Hay, Jr.

5 University of Colorado, Denver, CO USA

Jonathan M. Davis

6 Department of Pediatrics and the Tufts Clinical and Translational Science Institute, Tufts Medical Center, Boston, MA USA

Joyce R. Javier

7 Department of Pediatrics, Children’s Hospital Los Angeles, Keck School of Medicine of the University of Southern California, Los Angeles, CA USA

Associated Data

All data pertaining to this report are contained in this special article.

• This is an introduction to an article series devoted to the current state and future of pediatric research.
• The role of public–private partnerships, influencing factors, challenges, and recent trends in pediatric research are described, with emphasis on funding, drug and device development, physician-scientist training, and diversity.
• Potential solutions and advocacy opportunities are discussed.

Introduction

Children have unique and rapidly changing physical, psychosocial, and developmental needs. Addressing early-life diseases and adverse childhood experiences has lifelong benefits for individuals, families and communities. This may also limit or even prevent many chronic adult-onset diseases that originate in early life. However, most pediatric researchers face financial, regulatory, institutional, ethical, and career challenges (Table  1 ), placing pediatric research at a distinct disadvantage compared to adult investigations (Fig.  1 ).

Current challenges and potential solutions to promote pediatric research.

The most important factors are highlighted as bold text.

I-ACT for Children Institute for Advanced Clinical Trials in Children, IMG international medical graduate, NIH National Institutes of Health, RCT randomized controlled trial, SHIP-MD System of Hospitals for Innovation in Pediatrics-Medical Devices.

Factors influencing pediatric research, pediatric health and disease, as well as adult health and disease are illustrated with arrows.

Federal research funding

Pediatric research funding from the National Institutes of Health (NIH), the largest public funding agency worldwide, has been historically low compared to funding for adult diseases. 1 , 2 Although pediatric NIH spending has increased over time, the purchasing power of their pediatric and perinatal research portfolio declined by 15.9% and 12.4%, respectively from 2004 to 2015. 2 Fortunately, pediatric funding has recently significantly increased due to fiscal and legislative responsiveness requiring NIH to report pediatric research spending annually. 3 Nonetheless, high inflation and the COVID-19 pandemic may place future pediatric research funding at risk. Furthermore, priorities for federal pediatric research support may need to be adjusted to account for rapidly changing healthcare needs 4 and pediatric disease burden. 5

Drug and device development

Pediatric drug and device development continues to lag behind programs addressing adult conditions. Industry-sponsored trials involving children remain limited due to expected lower profitability. Heightened regulatory, ethical, and safety standards for clinical trials involving pregnant women and children, and issues with obtaining parental informed consent and child assent highlight the considerable challenges. Most pediatric diseases are considered rare, which often results in trial prolongation and inadequate enrollment. 6 Pre-clinical models for many childhood diseases are lacking and designing pediatric studies requires multiple stakeholders; outcome measures are not uniformly standardized 7 and assessing the impact of interventions on neurodevelopmental outcomes can require years of follow-up. Many pediatric clinical research sites do not enroll a single patient, often due to limitations with a highly trained workforce. Consequently, most drugs and devices used in children are not approved by the US Food and Drug Administration (FDA) and approximately two-thirds of FDA-approved drugs and biologics with indications relevant to children are marketed for longer than 5 years without adequate pediatric safety and efficacy labeling. 8 Likewise, most FDA approvals of high-risk pediatric devices are based on adult trials, with few children exposed to these devices before market availability. 9

To address these shortcomings, several legislative and regulatory changes have been enacted. The Best Pharmaceuticals for Children Act (2002) incentivizes pharmaceutical companies to test drugs in children by giving them an additional 6 months of market exclusivity. The Pediatric Research Equity Act (2003) and the NIH Inclusion Across the Lifespan Policy (2017) mandate the inclusion of participants of all ages in human subject research. Several public–private partnerships and other national/international research collaborations have recently emerged, designed to streamline pediatric clinical trial processes and drug and device development. These include the International Neonatal Consortium (oversight by the Critical Path Institute), a global collaboration that focuses on novel regulatory pathways for evaluating the safety and effectiveness of neonatal therapies, 10 the FDA-sponsored System of Hospitals for Innovation in Pediatrics-Medical Devices initiative to accelerate pediatric device development, and the Institute for Advanced Clinical Trials for Children to facilitate multicenter studies for pediatric drug development.

Perspective of academic institutions

Academic medical institutions face increasing financial constraints due to: (1) external competition, (2) expanded regulatory requirements, (3) limited funding, (4) rising provider costs, (5) the need to educate junior physician-scientists, (6) increased costs of conducting high-quality research, and (7) providing medical care to a diverse population with limited reimbursement. 11 , 12 Pediatric departments are especially impacted by financial burdens due to increasing proportions of Medicaid recipients, heightened consumer expectations and regulatory requirements, limited NIH and industry funding, and escalating medical costs. 11 These limitations can reduce support for pediatric research infrastructure and training. New organizational and aligned strategic funding models incorporating departmental research support may help to overcome these challenges. 11 Improved federal funding is also essential to train the pediatric physician workforce, as requested by the American Hospital Association and 25 other healthcare organizations. 13

Physician-scientist training

Pediatric NIH funding is increasingly concentrated in relatively few research-intensive institutions, challenging diversity in research and further impacting the physician-scientist pipeline. Over a 5-year period, 15 institutions received 63% of all pediatric R01-equivalent NIH awards. 14 The majority of R01-funded pediatric physician-scientists were male (63.6%), full professors (58%), and held senior leadership positions (24%). Only 15% of pediatric R01-awards were granted to non-professor physician-scientists. 14 Furthermore, the success rate for NICHD career development awards has declined since 2010. 14 The limited support for junior pediatric physician-scientists, compounded by individual career choices and competing clinical responsibilities, has created a declining and aging pediatric research workforce. This may limit future discoveries and innovative therapies for children. 15 Several recent initiatives are now addressing this gap. One example is the National Pediatric Physician-Scientist Collaborative Workgroup, a collaborative of physician-scientists, graduate medical education leaders, department chairs, and trainees from 19 pediatric programs across the US which aims to strengthen the pediatric physician-scientist pipeline. 16 Mentorship at the institutional, regional and national level fosters networking opportunities and support for aspiring pediatric researchers. Another important program includes the NIH Loan Repayment Program to recruit and retain highly qualified health professionals into research careers. Offering early-career formal research education during medical school and physician training can lead to greater future academic productivity and funding success, thus strengthening the physician-scientist workforce. 17

Gender and racial/ethnic diversity

Despite comparable enrollment in medical schools, women account for only 18% of hospital chief executive officers and 16% of all deans and department chairs in the US. 18 Women remain in the minority as senior authors (10%) and editors-in-chief (7%) at high-ranking medical journals. 18 They also comprise less than one-third of NIH-awardees, even though they are as successful as men in obtaining first-time grants. 19 Factors contributing to these disparities include implicit gender bias and institutional policies disadvantaging women. Early-stage investigator or career development grants sponsored by NIH or other funders are limited to scientists who finished their training within 10 years, which disproportionately disadvantages women. 20 Race and ethnicity also impact career trajectories of physician researchers. 21 The Coalition for Pediatric Medical Research is now addressing the need to train the next generation of diverse pediatric researchers. Furthermore, innovative solutions to integrate international medical graduates into the research workforce in addition to increased funding for US-trained physicians represent one strategy to address the current physician-scientist shortage. 22 Finally, clinical studies must be designed to improve the participation of underrepresented populations, 23 to ensure that drugs and devices are studied in target populations who will benefit most from such interventions. This can be accomplished through community-based participatory research including parental engagement for pediatric trials. 24

Dissemination, data sharing and reuse

Timely dissemination of trial results through peer-reviewed publications, registries, and data depositories are imperative to facilitate evidence-based care and decision-making. The FDA Amendments Act (2007) and the NIH require that trials are prospectively registered in CinicalTrials.gov and that summary results of FDA-regulated or NIH-funded interventional trials are made available within 12 months of primary study completion. However, only 39% of registered pediatric trials reported results in peer-reviewed publications and 23.5% in the ClinicalTrials.gov registry by 3 years. 25 Notably, 11% of trials were discontinued early, with recruitment failure as the most common cause. 25 The NIH Policy on Data Sharing (2003) requires a data-sharing plan in all grant applications and the International Committee of Medical Journal Editors (LCMJE) requires a data-sharing statement. However, less than a third of LCMJE-affiliated journals have implemented a data-sharing policy and only a few published trials provided individual patient data in repositories. 26 , 27 Improved monitoring and incentives for data sharing and timely dissemination of trial results may overcome these problems.

Implications for patient outcomes

High-level evidence from clinical studies remains limited for many pediatric diseases and interventions. Most pediatric studies registered in ClinicalTrials.gov are small-scale, single-center, and not funded by industry or the federal government, which translates into fewer drugs being studied over time. 28 Published pediatric studies involve significantly fewer randomized controlled trials (RCTs), systematic reviews, and therapeutic trials compared to adults. 29 This has significant implications for child health with preterm birth and neonatal infections remaining the leading causes of mortality during the first month of life, accounting for approximately half of the 2.4 million neonatal deaths annually worldwide; there has been limited progress over the past 2 decades due in part to a lack of quality RCTs in this area. 30 – 32

There remains an urgent need to communicate 33 and advocate healthcare institutions, elected officials, funders, and the public that promoting research focused on fetal and early life has lifelong benefits for children, adults, and society. 34 The COVID-19 pandemic has proven that advances in pediatric and adult research can be achieved expediently, especially when governments promote the development of public–private partnerships and global collaboration. Broad support for NIH-sponsored pediatric and perinatal research, enforcement of existing NIH and FDA mandates related to clinical trial reporting, data sharing and reuse, inclusion of children in clinical research, collaborative science, and advocacy hold great promise to advance research and benefit children and future adults.

Author contributions

E.M.S. wrote the initial draft of the manuscript. All authors substantially contributed to the conception and content of the article, critically revised the manuscript for important intellectual content, and approved the final version for publication.

Data availability

Competing interests.

The authors declare no competing interests.

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Establishing a Pediatric Health Equity, Diversity, and Inclusion Research Protocol Review Process

Development and overview of the edi research review process, formation of the edi research review process, edi research review committee, criteria for edi research review, overview of edi research review process, implementation of edi rrc feedback, evaluation of the edi research review process, challenges and lessons learned in establishing an edi research review, conclusions, acknowledgments, establishing a pediatric health equity, diversity, and inclusion research review process.

Contributed equally as co-first authors.

FUNDING: No external funding.

CONFLICT OF INTEREST DISCLOSURES: Dr Katz-Wise is a diversity consultant for Paramount Global; Valerie L. Ward, MD, MPH is the coleader of the Health Equity Core and Health Equity Advisor for the Children and Youth with Special Health Care Needs Research Network, which is supported by the Health Resources and Services Administration of the US Department of Health and Human Services under UA6MC31101 Children and Youth with Special Health Care Needs Research Network and this information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by Health Resources and Services Administration, US Department of Health and Human Services, and the US Government; Dr Ward is also a member of the National Project Advisory Committee for a project being conducted by the Institute for Patient-and Family-Centered Care and Cincinnati Children’s Hospital Medical Center funded by the Lucile Packard Foundation for Children’s Health; Dr Young Poussaint receives National Institutes of Health funding for PBTC Neuroimaging Center and National Institutes of Health funding for the Neurologic sequelae of MIS-C study; Dr Boskey is supported by the National Institutes of Health under 1U01OD033248-01 and she is on the advisory board of the ASPIRE Center of the Planned Parenthood League of Massachusetts; and the other authors have indicated they have no conflicts of interest relevant to this article to disclose.

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Sabra L. Katz-Wise , Snehal N. Shah , Patrice Melvin , Elizabeth R. Boskey , Amanda W. Grice , Susan Kornetsky , Tina Young Poussaint , Melicia Y. Whitley , Anne M. Stack , S. Jean Emans , Benjamin Hoerner , James J. Horgan , Valerie L. Ward; Establishing a Pediatric Health Equity, Diversity, and Inclusion Research Review Process. Pediatrics 2024; e2023062946. 10.1542/peds.2023-062946

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Equity, diversity, and inclusion (EDI) research is increasing, and there is a need for a more standardized approach for methodological and ethical review of this research. A supplemental review process for EDI-related human subject research protocols was developed and implemented at a pediatric academic medical center (AMC). The goal was to ensure that current EDI research principles are consistently used and that the research aligns with the AMC’s declaration on EDI. The EDI Research Review Committee, established in January 2022, reviewed EDI protocols and provided recommendations and requirements for addressing EDI-related components of research studies. To evaluate this review process, the number and type of research protocols were reviewed, and the types of recommendations given to research teams were examined. In total, 78 research protocols were referred for EDI review during the 20-month implementation period from departments and divisions across the AMC. Of these, 67 were given requirements or recommendations to improve the EDI-related aspects of the project, and 11 had already considered a health equity framework and implemented EDI principles. Requirements or recommendations made applied to 1 or more stages of the research process, including design, execution, analysis, and dissemination. An EDI review of human subject research protocols can provide an opportunity to constructively examine and provide feedback on EDI research to ensure that a standardized approach is used based on current literature and practice.

In recent years, there has been an increasing interest in equity, diversity, and inclusivity (EDI) research, 1 , 2 which has facilitated welcome changes in the research ecosystem, such as modifications to funding mechanisms. EDI research can be defined as research that positions equity at the core of health outcomes, considers multiple interacting spheres of influence (systems of power, relationships and networks, individual factors, physiologic pathways), and incorporates historical and life-course perspectives. 3 High-quality EDI research requires expertise, skill, and experience. However, researchers may lack expertise in applying a health equity framework 3 , – 10 to research design, conduct, analysis, and reporting, resulting in poorly designed studies that may lead to further harm to underrepresented and underserved communities. 11 Key components in high quality health equity research include the following: (1) a conceptual model to inform the study hypothesis, 8 , 9 , 12 (2) research question and design that do not perpetuate bias, 13 , 14 (3) input about study question and design from patients and community members with lived experience, 4 , 5 , 15 (4) participant engagement activities that include staff with lived experience, 5 , 8 , 15 (5) intentional recruitment of diverse populations, 16 (6) analytic methods that appropriately consider subpopulations (eg, reference group selection, address missing data, small sample size, oversampling), 4 , 13 , 15 , 17 and (7) language use that conforms to current health equity standards. 18 For example, many researchers have proposed study outcomes that are stratified by race and ethnicity or other EDI-related characteristics, or include these characteristics as primary predictors in multivariable regression models without identifying a framework or conceptual model to explain the relationship. 12 The absence of such a framework may lead to problematic assumptions about biological differences. Without a proper grounding in theories relevant to EDI work, researchers may unknowingly perpetuate race-based medicine (the mischaracterization of race as an essential biological variable relevant to clinical decision-making) when their focus should be on race-conscious medicine (considering racism rather than race as the social determinant of health). 19 , 20  

In response to a marked increase in EDI research, the Boston Children’s Hospital Institutional Board Review (IRB) noted the need for adequate review of these research protocols and collaborated with the Boston Children’s Hospital Office of Health Equity and Inclusion (OHEI) to develop a supplemental EDI review process that was embedded within the existing IRB review process. The overall purpose of this review process was to improve the quality of EDI research conducted at Boston Children’s Hospital, including through assessment of research design, methods, recruitment and representativeness, and dissemination with a focus on improving representativeness by actively engaging, recruiting, and retaining historically underrepresented and marginalized individuals and communities. Below we describe the development, implementation, and initial evaluation of the EDI Research Review Process.

Starting in 2020, the OHEI began to receive a high volume of requests from multiple sources for ad-hoc review of EDI-related research, surveys, and quality improvement and educational projects. In response, the health equity research experts in the OHEI collaborated with the hospital’s quality improvement experts and researchers in the Program for Patient Safety and Quality, along with other researchers and subject matter experts from across the hospital, to form the Health Equity Quality Improvement and Research Committee. This committee reviewed EDI-related research, quality improvement, and educational projects to make certain that the projects aligned with the Boston Children’s Hospital Declaration on EDI. 21  

As awareness evolved about researchers’ barriers and needs, and the volume of projects submitted for review increased, the OHEI partnered with the Boston Children’s Hospital IRB to form the EDI Research Review Committee. Initially implemented in January 2022, this innovative EDI research review process was modeled operationally after other IRB-adjacent review processes, such as departmental scientific review before IRB submission or pharmacy ancillary review after initial IRB submission for studies that involve the use of medication (to ensure safety protocols are in place for patients and employees). Many studies at the hospital require at least 1 adjacent review because of the nature of the research conducted. EDI research review was felt to be an important addition to existing reviews to ensure that EDI research was conducted in ways that did not further existing health disparities and inequities. Although there was little existing literature available regarding a dedicated EDI research review process, a recent article by Meloney et al suggested IRBs have a responsibility to ensure inclusivity and diversity in research and recommended specific ways in which IRBs can modify current research review processes to support EDI in clinical trials. 22  

Given the long history of racism and bias in biomedical research, 2 this EDI research review process was designed to translate ethical considerations specific to EDI into research methodology. For example, researchers were provided with guidance to support recruitment of diverse populations, which is both methodologically sound and, from an ethical standpoint, allows the benefits of research studies to be shared across a broader population. Specifically, the EDI research review process aimed to ensure (1) human subjects EDI-related research protocols use appropriate methodology and are aligned with the Boston Children’s Hospital Declaration on EDI 21 and (2) clinical research at Boston Children’s Hospital considers health equity research principles. 4 , 5 , 8 , 9 , 12 , – 15 , 17 , 18 After it was formalized, the EDI research review process was communicated to the Boston Children’s Hospital research community via an e-mail announcement from the IRB.

The primary component of the EDI research review process was the EDI Research Review Committee (EDI RRC). The EDI RRC provided education and recommendations (factors suggested by the committee that could improve their protocol) and/or requirements (factors that must be addressed before final IRB review) for study teams before the IRB review. The committee was comprised of 11 faculty, staff, and employees with EDI expertise (eg, expertise in community-engaged research; health equity research; quality improvement; and research with underrepresented groups, such as sexual and gender minorities), including researchers, clinicians, data analysts, and legal representatives. Most committee members were previously part of the Health Equity Quality Improvement and Research Committee. All committee members were identified as representing different types of EDI expertise and appointed to the committee. Committee membership was intentionally diverse to ensure multiple perspectives, lived experiences, and types of professional expertise were represented, and expertise included health equity research, social determinants of health, biostatistics, adolescent medicine, sexual and gender minority health, EDI-related measurement, and legal considerations ( Fig 1 ). We were especially intentional in creating a committee membership that was inclusive of individuals with diverse lived experiences, including from populations that have been historically underrepresented in biomedical research, medically underserved communities, and historically marginalized populations. As some types of research conducted at the hospital include employees as study participants, the inclusion of colleagues from the Boston Children’s Hospital Office of General Counsel was important for ensuring that employees (including trainees) were protected as a special population.

Expertise represented on the EDI RRC.

The EDI RRC worked closely with the IRB to establish criteria for EDI review ( Table 1 ), which were used by the IRB to determine which human subjects research protocols came to the EDI RRC. Once a protocol was determined to meet these criteria, the IRB referred the study team to the OHEI, who communicated with the study team about the steps of the EDI research review process. This systematic approach to identifying protocols for review was critical to ensuring appropriate protocols were referred to EDI RRC. Principal investigators could also self-refer before IRB submission. The EDI review had 2 main workflows ( Fig 2 ), which were determined by the type of protocol. EDI research protocols that included a primary data collection component (defined as the collection of original data) were reviewed by the full EDI RRC. An example of a primary data protocol that was reviewed by the full committee is one that examined the racial and socioeconomic inequities in the delayed diagnosis of a medical condition. Protocols that were limited to secondary data analysis (defined as analyzing data that were previously collected, including electronic medical record reviews) were reviewed by a subcommittee of 3 members from the full EDI RRC. One such protocol examined the association between the Childhood Opportunity Index and major adverse events in outcomes of a medical procedure. Research protocols for multi-institutional projects with BCH as the single IRB were reviewed by the committee; but when the primary IRB was from an institution outside of BCH, these studies were exempt from review. The full committee met virtually via Zoom 2 to 4 times monthly, and the subcommittee met virtually via Zoom weekly to review the protocols. Typically, 2 protocols were reviewed at each full committee or subcommittee meeting, and up to 16 protocols (4–8 primary data collection and 8 secondary data analyses) were reviewed each month. Protocols assigned to a meeting were reviewed by all committee members attending that meeting. To assist study teams in considering EDI during the study design, an EDI Research Checklist for Investigators was developed and later updated to reflect the committee’s experience ( Supplemental Fig 3 ).

Criteria for Review by Equity, Diversity, and Inclusion Research Review Committee

SES, socioeconomic status; NA, not applicable.

Workflow of EDI research review process, beginning with the referral of a research protocol from the IRB or the Principal Investigator (PI).

For all types of protocols, the study team completed a prereview form (also since updated, see Supplemental Fig 4 ) describing the study with an emphasis on the EDI-related aspects of the study design. For primary data collection protocols, at least 1 representative from the study team with knowledge about the EDI-related aspects of the project (Principal Investigator or another team member) was invited to attend a meeting of the full EDI RRC and present their project, focusing on the EDI-related aspects. This was followed by a question and answer period in which committee members’ questions focused on providing methodological feedback and review of alignment with the Boston Children’s Hospital EDI Declaration. 21 After the question and answer period, the committee met without the study team present to discuss recommendations and requirements. Once the feedback was finalized, the study team was invited back to the virtual meeting, where the requirements and/or recommendations were shared with them. Within a week, the study team received a letter confirming the EDI RRC review and detailing the committee requirements and/or recommendations. For the secondary data analysis protocols, the study team was not required to attend a meeting. Instead, the subcommittee reviewed these protocols at weekly meetings and provided a similar letter to the study team with requirements and/or recommendations.

For all types of protocols that underwent an EDI review, all committee requirements needed to be incorporated into the protocol before IRB submission. For committee recommendations , the study team either needed to incorporate them into the study protocol or justify why they did not accept the recommendations. The EDI RRC letter and the study team’s responses were submitted to the IRB as part of the protocol submission materials. The IRB then reviewed whether requirements were incorporated and whether recommendations were included or there was an acceptable justification for why they were not. The IRB was responsible for the final determination.

The EDI research review process was evaluated after the first 20 months of implementation by examining the number and types of research protocols reviewed, and the types of requirements and recommendations provided to research teams. The analytical cohort for this study included all primary and secondary data collection research protocols with an EDI component submitted directly to the EDI RRC by the study team before IRB submission and/or referred by the IRB from January 2022 to August 2023. The OHEI maintained a dataset of all reviewed protocols, including the date of initial contact, Principal Investigator name, department or division, protocol title, review type (primary or secondary data review), date of review, date of the final letter sent to the Principal Investigator, and a multicolumn narrative of requirements and recommendations provided to the research team by the committee. Narrative requirements and recommendations were aggregated into common themes and described by the research stages they pertained to, including design, execution, analysis, and dissemination. Quantitative results are presented as frequencies and percentages for categorical variables and median (IQR) for the number of days from EDI review to recommendation letter dissemination. All analyses were performed using SAS version 9.4.

From January 2022 to the end of August 2023, 78 research protocols were reviewed by the EDI RRC ( Table 2 ). Forty-five (57.7%) protocols involved primary data collection and went through a full committee review, whereas 33 (42.3%) protocols limited to secondary analysis of existing data went through a subcommittee review. The number of protocols reviewed fluctuated substantially over the study period, ranging from 1 to 14 in any given month, with an average of 4 protocols per month. The volume of EDI-related research protocols exceeded our initial expectations, necessitating more frequent review meetings to provide timely feedback to study teams.

Equity, Diversity, and Inclusion Research Review Committee Overview of Research Protocols Reviewed ( N = 78)

This represents 12% (45 of 370) of all primary data protocols received by the IRB during this time frame.

This represents 5% (33 of 708) of all secondary data protocols received by the IRB during this time frame.

Individual protocols may receive both recommendations and requirements.

The median number of days from the EDI RRC review meeting to the requirement or recommendation letter being sent out was 5 days (IQR 1.0–8.0) ( Table 2 ). This turnaround time differed by review type, with primary data collection review protocols taking a median of 6 days (IQR 5.0–9.5) and secondary review protocols taking a median of 1 day (IQR1.0–2.0) ( Table 2 ).

The protocols reviewed by the EDI RRC represented a heterogeneous group of departments and divisions across the hospital. One-third came from 3 departments and divisions: general pediatrics ( n = 10), cardiology ( n = 9), and adolescent medicine ( n = 8) (data not shown). Eleven (14.1%) protocols that underwent review were approved as submitted with no requirements or recommendations provided by the EDI RRC. Seven primary data collection protocols received requirements, whereas none of the secondary data analysis protocols were given requirements ( Table 2 ). Of the 67 protocols that received recommendations to improve EDI-related aspects of the research study, 36 involved primary data collection, whereas 29 involved secondary data collection ( Table 2 ). Recommendations were made more frequently than required changes. Recurrent EDI RRC recommendation and requirement themes are presented in Table 3 . One-third of the protocols received requirements or recommendations to ensure that the research was grounded in a conceptual model or theoretical framework to limit the possibility that the study design, execution, analysis, and/or dissemination of findings would inadvertently perpetuate existing bias ( Table 3 ). Twenty percent of protocols were given requirements or recommendations to address missing EDI data or to follow appropriate guidelines on the collection and reporting of race, ethnicity, and language data ( Table 3 ).

Recommendations and Requirements for Research Protocols Reviewed by the Equity, Diversity, and Inclusion (EDI) Research Review Committee ( n = 67)

Of 78 total research protocols reviewed, 85.9% ( n = 67) were given requirements or recommendations provided in Table 1 and 11.1% ( n = 11) were approved as is with no recommendations. NA, not applicable; REaL, race, ethnicity, and language; SES, socioeconomic status; SOGI, sexual orientation and gender identity.

A requirement for 1 or more research protocols involved.

In our EDI review process, recommendations and/or requirements to improve the EDI-related aspects of research studies were made more than 85% of the time. As a result, standard recommendations for conducting EDI research were developed, many of which are summarized in the checklist for investigators ( Supplemental Fig 3 ). One frequent recommendation was that the protocol should use an EDI conceptual model or framework that centers structural and systemic barriers (30%). Several health equity frameworks exist, although they may need to be adapted to support specific research approaches. 3 , – 10 , 23 , – 26 Equity-conscious research requires acknowledgment that structural and systemic barriers are key determinants of health-related outcomes. Without the context of structural and systemic barriers, hypotheses involving race or other EDI-related characteristics as primary predictors risk perpetuating bias, 2 , 12 , 20 , 27 or leading to erroneous conclusions that racial and ethnic inequities can be attributed to genetic differences.

We recommended enhanced community engagement for more than 10% of the reviewed protocols. Community members can be engaged in research in several ways, including, but not limited to, as members of the primary research team (eg, coinvestigator or research assistant), through partnerships with research teams where community members are key stakeholders, and through participation in community advisory boards. Community members can provide valuable input on many aspects of the research process, from recruitment strategies to interpretation of research findings. When community members are not involved, research can perpetuate harm by creating opportunities for research participation that are unaffirming or even offensive (eg, responding to a survey item with outdated language), furthering negative stereotypes about a particular community, or causing harm through the ways in which research findings are presented and ultimately disseminated.

The EDI RRC also provided recommendations to study teams to standardize the measures used to collect data on race and ethnicity, sexual orientation and gender identity, and other sociodemographic characteristics. Measures used to assess EDI-related characteristics are often outdated and contain language that may be perceived by study participants as unaffirming and/or even inaccurate in describing their identities and experiences. Thus, it is important to use current terminology and follow standard approaches that have been established for measuring EDI-related characteristics. Several health equity language and data collection standards exist, and researchers are encouraged to use them. 18 , 28  

Finally, missing data were a concern in one-third of the protocols reviewed by the EDI RRC. A high percentage of missing race and ethnicity, and other sociodemographic data will produce biased results, except when data are missing completely at random or when the chosen statistical model appropriately accounts for patterns of missingness. Additionally, we suggested that research teams should ensure sufficient statistical power to enable subgroup comparisons based on EDI characteristics.

Evaluation of this EDI review of human subjects research protocols at a pediatric academic medical center demonstrated that the majority of protocols (67 of 78) referred to the EDI RRC for review benefitted from EDI-related recommendations for improvement. Recommendations applied to various stages of the research process, such as identifying an EDI framework during the design phase, using best practices for measurement of EDI-related constructs during the execution phase, accounting for missingness among EDI-related variables during the analytic phase, and involving community members in the collection, interpretation, and dissemination of research findings. The results of this evaluation support the need for EDI research review as well as the need for investigators to receive guidance on best practices for conducting EDI research. The committee was able to offer both feedback and guidance on EDI research by translating ethical considerations into methodology and improving the quality of EDI research being done across the institution. The improvement of EDI research quality was demonstrated when research teams returned to the committee with another project that reflected feedback that the committee had provided on a previous project, such as using updated terminology to refer to specific populations, expanding the languages in a project beyond English, or consulting with a community advisory board.

Several challenges and limitations were identified during the development and implementation of the EDI research review. First, this new and innovative process was developed without the aid of existing literature to guide its development. Departmental scientific reviews, during which studies are evaluated for scientific rigor before IRB submission, may be considered an analogous process, but the EDI-focused research review is novel. A recently published paper provided IRBs with recommendations to promote diversity and inclusion in intervention studies. 22 The authors suggest a range of IRB activities to support inclusion, such as acknowledgment of IRB responsibility in promoting EDI, ensuring recruitment of diverse populations and community engagement, and supporting diverse IRB membership. 22 Although this paper was published after the EDI research review process was implemented, several of the authors’ recommendations were already included in the EDI review process. 22  

Second, because of the urgent need to begin this review process, the process was operationalized while still under development. This led to some reluctance from researchers because the expectations for EDI research review were initially unclear, underwent revisions during the development process, and created delays in obtaining approval to begin research projects. Early on, there was a backlog of research protocols requiring review, necessitating extra committee meetings to ensure the timeliness of review.

Third, EDI review requires both time and commitment from committee members, many of whom are uncompensated for this service. Although the importance of EDI work is increasingly acknowledged, this work may be undervalued. 29 In addition, EDI work is often done by historically marginalized or underrepresented individuals who are subject to the “minority tax,” such that they are disadvantaged by working on EDI initiatives that are uncompensated and not typically considered a metric of academic success. 30 Fortunately, the hospital provided protected time for some EDI RRC committee members, including the chairs. However, the inability to provide protected time for other committee members has created challenges in finding individuals who have available protected administrative or academic time to serve in this capacity. 28  

Additionally, it was observed early in the process that the members of the EDI RRC who represented the legal department had important considerations that clinical and research members of the EDI RRC might be unaware of or may not have expertise in. For example, these members identified the need to provide extra protections and processes for studies proposing to use employees as study participants, underscoring the importance of legal representation on the committee to provide this expertise. This emphasizes the importance of recognizing the value of diverse perspectives and differing expertise within the committee, and in needing to take time not only to educate research and nonresearch committee members about one another’s approach, necessary priorities, and concerns but also to create space for ongoing crossdisciplinary dialogue.

Finally, it is important to recognize that this review process was developed at a pediatric academic medical center that has prioritized EDI initiatives. 21 It may not work in the same way at other institutions with different resources, levels of EDI expertise, and/or prioritization of EDI initiatives as they relate to research.

For other institutions that hope to develop a similar EDI research review process, it is critical to obtain commitment from institutional leaders, who can prioritize and provide resources for this review process. Close partnerships between the IRB staff and EDI RRC are essential, as the process cannot proceed without IRB leadership. Communicating with the institution’s research community about EDI research review early in the process is recommended to allow research teams to plan for this supplemental review. As institutional leaders and some members of the research community may not have EDI expertise, it may be necessary to articulate why EDI research, as well as review of EDI research, are necessary. Recruiting committee members for the EDI RRC who represent a diversity of experiences and perspectives, including representation from the legal department and/or other related departments, is highly recommended. It may be necessary to provide additional explanation of research processes for committee members with less research experience. If possible, committee members and others involved in the EDI research review process should be compensated through protected administrative and/or academic time.

Assessing the EDI needs of the research community is recommended, as it will allow the alignment of training and resources to support research teams in developing EDI protocols. Research teams may also need coaching during the EDI research review, particularly researchers without formal EDI training, so that they understand why changes to their projects are needed and how they can improve their research. Finally, the development of an EDI research review is likely to be a learning process for all involved, as the level of researcher EDI knowledge is revealed and as the committee recommendations evolve to address the variety of EDI-related considerations that arise during the review process.

EDI research review is critically important to ensure the use of appropriate EDI methodology and address ethical considerations specific to EDI research. EDI research must be conducted with an awareness of the influence of potential biases and thoughtfulness about the methods used to ensure that this research does not contribute to health inequities. A supplemental EDI review can provide a process to constructively examine and provide feedback on EDI research to ensure that it is standardized and follows recommendations.

We thank Kali McCollister and Ashley B. Tartarilla, MPH for their administrative assistance.

Drs Katz-Wise and Shah conceptualized and designed the study and drafted the initial manuscript; Drs Ward, Young Poussaint, and Kornetsky conceptualized and designed the study; Ms Grice coordinated the data collection and drafted the initial manuscript; Ms Melvin supervised data collection and conducted the analyses; Dr Boskey assisted with data analyses; and all authors approved the final manuscript as submitted and agreed to be accountable for all aspects of the work.

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equity, diversity, and inclusion

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April 29, 2024

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Multisite QI collaborative increases appropriate pediatric antibiotic use

by Elana Gotkine

A multisite collaborative increases appropriate antibiotic use for pediatric community-acquired pneumonia, skin and soft tissue infections, and urinary tract infections, according to a study published online April 29 in Pediatrics .

Russell J. McCulloh, M.D., from the University of Nebraska Medical Center in Omaha, and colleagues conducted a quality improvement initiative across 118 hospitals with an aim of increasing the proportion of children older than 60 days of age receiving appropriate empirical, definitive, and duration of antibiotic therapy for community-acquired pneumonia, skin and soft tissue infections , and urinary tract infections to ≥85 percent by Jan. 1, 2022.

The authors reviewed 43,916 encounters: 30,799 preintervention and 13,117 postintervention. Monthly audits with feedback, educational webinars, peer coaching, order sets, and a mobile app with site-specific, antibiogram-based treatment recommendations comprised the interventions.

The researchers found that at baseline, the median adherence to empirical, definitive, and duration of antibiotic therapy was 67, 74, and 61 percent, respectively, and increased to 72, 79, and 71 percent, respectively, during the intervention period. There was a 13 percent intercept change observed at intervention for empirical therapy in an interrupted time series analysis and a 1.1 percent monthly increase in adherence for antibiotic duration above baseline rates. No increase was seen in balancing measures of care escalation and revisit or readmission.

"Although no metric achieved the goal of 85 percent adherence, our observed rates during the intervention period exceeded those reported in previous studies," the authors write.

Margaret S. Ridge et al, We Need It All in Quality Improvement: Local Change, Collaboration, and an Equity Lens, Pediatrics (2024). DOI: 10.1542/peds.2024-065653

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Truveta Unveils Largest Mother-Child EHR Dataset for Pregnancy and Pediatric Research

by Jasmine Pennic 04/26/2024 Leave a Comment

What You Should Know: 

– Truveta , a data company dedicated to “Saving Lives with Data,” announced today the launch of the most comprehensive mother-child electronic health record (EHR) dataset ever assembled. 

– Truveta’s dataset surpasses traditional claims-based datasets, which often lack clinical details and have reporting delays. By offering comprehensive, longitudinal EHR data, Truveta empowers researchers to conduct more rigorous and impactful studies, ultimately improving the lives of mothers and children.

Revolutionizing Research on Mothers and Children

Truveta’s dataset offers researchers a unique opportunity to study the complexities of maternal and pediatric health. Key areas of investigation include:

• Understanding the Link Between Maternal and Neonatal Health: Researchers can explore how maternal health impacts birth outcomes, long-term child development (including neurodevelopment), and childhood conditions up to age 5.
• Post-Market Drug Safety Monitoring: Truveta’s data can be used to evaluate the safety of medications and vaccines taken by mothers during pregnancy. This allows researchers to identify potential risks associated with specific medications and guide future clinical decisions.
• Studying Category C Medications: Category C medications have potential risks for fetuses, but limited research exists on their effects in humans. Truveta’s data can help determine the safety and efficacy of these medications for pregnant women.
• Investigating Pediatric Conditions: Researchers can analyze connections between maternal factors (demographics, health history, pregnancy outcomes) and the development of childhood conditions like asthma and eczema.

Unparalleled Data Depth and Security

Truveta’s mother-child dataset offers several key advantages:

• Comprehensiveness and Timeliness: Truveta leverages data from over 30 healthcare systems, providing a complete picture of patient journeys. This includes clinician notes, medical images, claims data, social determinants of health (SDOH) indicators, and mortality data – all updated daily.
• Longitudinal Patient Data: With access to over five years of longitudinal data on over 1 million mothers and their children, Truveta offers researchers a rich resource for in-depth analysis.
• Accuracy and Completeness: Truveta’s data accurately links mothers with their children, preserving crucial details like demographics, medical history, and pregnancy outcomes. Additionally, comprehensive child data is available, including delivery details, diagnoses, procedures, and immunizations up to age 5.
• Unmatched Privacy and Security: Truveta prioritizes data privacy and security. Their de-identification process adheres to the strictest HIPAA regulations, and they employ robust security protocols to protect patient information.

 “Perinatal women and their children have long been excluded from clinical trials and other retrospective data sources, and we can’t understand the full effects of medications, vaccines, and diseases on their connected health outcomes,” said Terry Myerson, CEO and co-founder of Truveta. “Truveta now offers the largest mother-child EHR dataset, empowering researchers to advance care for all mothers and children with complete, timely, and representative data.”

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Clarity Pediatrics raises $10M for treating ADHD and other chronic childhood conditions

Raising young kids who have been diagnosed with, or are suspected of having, ADHD can be challenging. Some children with this condition may have difficulties completing school work or grow easily frustrated and throw tantrums.

Parents who try to turn to professionals for help are often shocked to learn that due to a nationwide shortage of psychologists, it can take as long as nearly a year to get diagnosed and start seeing a therapist. And that’s not even mentioning the high cost of treatment, which can add up to thousands of dollars a year for out-of-network care.

Clarity Pediatrics , a chronic care startup founded in 2021, says it can reduce the wait time for receiving a diagnosis and beginning ADHD therapy from many months to a couple of days, for an average $15 co-pay per session.

The company’s secret sauce is that instead of providing individual therapy to children, the startup runs eight-week group therapy sessions for parents of newly or previously diagnosed kids.

Clarity chose to offer behavioral parent training (BPT) for one simple reason: the American Academy of Pediatrics recommends it for families of children ages five to 12 with mild-to-moderate ADHD. Since young kids are not mature enough to change on their own, BPT teaches parents strategies and skills to help their children focus in school and control emotional outbursts.

“There is no evidence that one-to-one therapy is effective for young kids with ADHD,” said Clarity’s CEO and co-founder Christina LaMontagne.

Over the last 18 months, Clarity has provided online care to thousands of families in California, and it plans to use $10 million in seed funds it raised from Rethink Impact, with participation from Homebrew and Maverick Ventures, to expend its services to other states in 2024.

Clarity is certainly not alone in trying to solve the problem of the lack of therapists for children. Startups like Brightline, Little Otter and Bend Health offer online pediatric mental health services, including ADHD.

For now, Clarity is solely focused on treating ADHD in kids ages five to 12 by providing diagnosis, therapy and prescriptions, but the company has plans to eventually offer healthcare for low-complexity pediatric chronic conditions like asthma, allergies and obesity.

Prior to founding Clarity, LaMontagne was the chief operating officer at Pill Club and a corporate development executive at Johnson & Johnson. The company’s co-founder, Dr. Alesandro Larrazabal, is a pediatrician who was trained at UCSF and Stanford and was in charge of specialty services at Kaiser Permanente.

Clarity’s seed round also included investments from January Ventures, Vamos Ventures, Alumni Ventures and City Light VC.

Heidi Patel, a managing partner at Rethink Impact, said she invested in Clarity because the incidence rate of chronic disease in children has tripled over the last 40 years, but the medical system doesn’t have enough specialists to treat these kids.

“There’s a really long wait time, and then even if you get a diagnosis, treatments are often not available, which is why 80% of kids are left completely untreated,” she said. “With Clarity, you’re getting a full basket of care.”

Research Matters

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Dermatology Funding Primary List: Updated 4.29.2024

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Some results uranium dioxide powder structure investigation

• Processes of Obtaining and Properties of Powders
• Published: 28 June 2009
• Volume 50 , pages 281–285, ( 2009 )

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• E. I. Andreev 1 ,
• K. V. Glavin 2 ,
• A. V. Ivanov 3 ,
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• V. V. Martynov 3 &
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Features of the macrostructure and microstructure of uranium dioxide powders are considered. Assumptions are made on the mechanisms of the behavior of powders of various natures during pelletizing. Experimental data that reflect the effect of these powders on the quality of fuel pellets, which is evaluated by modern procedures, are presented. To investigate the structure of the powders, modern methods of electron microscopy, helium pycnometry, etc., are used. The presented results indicate the disadvantages of wet methods for obtaining the starting UO 2 powders by the ammonium diuranate (ADU) flow sheet because strong agglomerates and conglomerates, which complicate the process of pelletizing, are formed. The main directions of investigation that can lead to understanding the regularities of formation of the structure of starting UO 2 powders, which will allow one to control the process of their fabrication and stabilize the properties of powders and pellets, are emphasized.

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Investigation of the Properties of Uranium-Molybdenum Pellet Fuel for VVER

Investigation of the Influence of the Energy of Thermal Plasma on the Morphology and Phase Composition of Aluminosilicate Microspheres

Evaluation of the possibility of fabricating uranium-molybdenum fuel for vver by powder metallurgy methods.

Patlazhan, S.A., Poristost’ i mikrostruktura sluchainykh upakovok tverdykh sharov raznykh razmerov (Porosity and Microstructure of Chaotic Packings of Solid Spheres of Different Sizes), Chernogolovka: IKhF RAN, 1993.

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Original Russian Text © E.I. Andreev, K.V. Glavin, A.V. Ivanov, V.V. Malovik, V.V. Martynov, V.S. Panov, 2009, published in Izvestiya VUZ. Poroshkovaya Metallurgiya i Funktsional’nye Pokrytiya, 2008, No. 4, pp. 19–24.

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Andreev, E.I., Glavin, K.V., Ivanov, A.V. et al. Some results uranium dioxide powder structure investigation. Russ. J. Non-ferrous Metals 50 , 281–285 (2009). https://doi.org/10.3103/S1067821209030183

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DOI : https://doi.org/10.3103/S1067821209030183

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• Published: 20 April 2024

Finding pediatric thromboembolism: needles in a big data haystack

• Katrina Blankenhorn 1 &
• William Beau Mitchell   ORCID: orcid.org/0000-0001-7018-0885 1  

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Thromboembolism is rare in healthy pediatric patients, but it is an increasing problem in children with underlying medical conditions such as cancer. The increase in childhood thromboembolism over the past decade is thought to be due to both heightened awareness of the diagnosis and more invasive technologies used in children with underlying medical conditions. 1 , 2 Understanding thromboembolism and developing safe treatment options for pediatric oncology patients is important due to the increased risk of death, organ dysfunction, and poor oncologic outcome. Consequences of thromboembolism also include increased hospital length of stay and cost. 3 Current published evidence on treatment for thromboembolism in the pediatric oncology population is limited, and published guidelines are often extrapolated from adult trials. 4 , 5 For example, in the 2018 guidelines released from the American Society of Hematology for treatment of thromboembolism in the pediatric population, although recommendations were made by a panel of experts, all the recommendations were limited by low or very low certainty in the evidence. 6

A key step toward gathering better evidence regarding pediatric thromboembolism in the pediatric oncology population will be the development of validated methods for accurately quantifying thromboembolism diagnosis and outcomes. Much current epidemiological research uses administrative data, or “big data,” to identify cases of interest; however, validity of research findings based on these data depend on the validity of the search parameters. Validity depends on both the proper diagnostic coding by physicians and on the proper choice of search codes by the researchers. Current research in the field has been met with various challenges. For example, recent studies to ascertain the rates of childhood thrombosis have relied on discharge diagnosis codes for identifying thromboembolism cases. 2 However, Burles et al. identified pitfalls of using discharge diagnosis code searches, highlighting the extensive presence of false positives and negatives in identifying thromboembolism cases. 7 This highlights the fact that healthcare databases, designed primarily for administrative and billing purposes, often lack comprehensive clinical information crucial for research. This includes lack of details on diseases of interest, health outcomes, medications, data on comorbidities, and quality of life. 8

Addressing the potential of administrative health care databases as validated sources for data, Doiron et al. discussed the benefits of linking large cohort studies with administrative data to enrich datasets, maximize resource utilization, and facilitate multidisciplinary research. 9 Additionally, regular validation studies, evaluating different code combinations or algorithms, are crucial for ensuring data accuracy, particularly in pediatric populations where such studies are limited. 10 In the current manuscript, Athale et al. tested the validity of using combinations of ICD and medication codes from large Canadian administrative databases, with a curated oncology database for case verification, to identify thromboembolism diagnoses in children undergoing primary cancer therapy. Multiple query algorithms were tested and validated using the oncology database. The best performing algorithm resulted in a sensitivity of 76% and specificity of 86% for identifying pediatric oncology patients with thromboembolism. Of note, the same analysis improved sensitivity to 84% when using exclusively ICD-10 codes, highlighting the previously reported limitations in using ICD-9 codes for epidemiological research 11 .

This study demonstrates the validation of search parameters for accurately identifying thromboembolism cases in pediatric populations undergoing cancer therapy using multiple administrative databases in conjunction with a large oncology database. These findings could be instrumental for future epidemiological and outcomes research in this area. Future research will be needed to validate this algorithm in other health care systems. Further validation research can also extend this algorithm to other populations such as neonates, or those with other high-risk conditions for thromboembolism. Such studies would test the algorithm’s generalizability and applicability in diverse clinical settings. Outside of the thromboembolism field this study can serve as a model for validation strategies for big data research in other diseases.

Monagle, P. et al. American Society of Hematology 2018 Guidelines for management of venous thromboembolism: treatment of pediatric venous thromboembolism. Blood Adv. 2 , 3292–3316 (2018).

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Monagle P, et al. American Society of Hematology 2018 Guidelines for management of venous thromboembolism: treatment of pediatric venous thromboembolism. Blood Adv 2 , 3292–3316 (2018).

Burles, K., Innes, G., Senior, K., Lang, E. & McRae, A. Limitations of pulmonary embolism ICD-10 codes in emergency department administrative data: let the buyer beware. BMC Med. Res. Methodol. 17 , 89 (2017).

Jaffray, J. et al. Development of a risk model for pediatric hospital-acquired thrombosis: a report from the Children’s Hospital-Acquired Thrombosis Consortium. J. Pediatr. 228 , 252–259.e1 (2021).

Doiron, D., Raina, P. & Fortier, I. Linkage between cohorts and health care utilization data: meeting of Canadian Stakeholders workshop participants. Linking Canadian population health data: maximizing the potential of cohort and administrative data. Can. J. Public Health 104 , e258–e261 (2013).

Ulrich, E. H. et al. A review on the application and limitations of administrative health care data for the study of acute kidney injury epidemiology and outcomes in children. Front. Pediatr. 9 , 742888 (2021).

Lau, B. D. et al. ICD-9 Code-Based Venous Thromboembolism Performance Targets Fail to Measure Up. Am J Med Qual 31 , 448–453 (2016).

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Blankenhorn, K., Mitchell, W.B. Finding pediatric thromboembolism: needles in a big data haystack. Pediatr Res (2024). https://doi.org/10.1038/s41390-024-03186-4

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Received : 18 March 2024

Accepted : 25 March 2024

Published : 20 April 2024

DOI : https://doi.org/10.1038/s41390-024-03186-4

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