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Children’s National receives LGBTQ+ Healthcare Equality Leader designation

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Children’s National Hospital is one of 496 health care providers nationwide earning coveted “LGBTQ+ Healthcare Equality Leader” designation.

Children’s National Hospital has received a perfect score of 100 and the designation of “LGBTQ+ Healthcare Equality Leader” in the Human Rights Campaign Foundation’s 15th anniversary edition of the Healthcare Equality Index (HEI). This is the nation’s foremost benchmarking survey of health care facilities on policies and practices dedicated to the equitable treatment and inclusion of their LGBTQ+ patients, visitors and employees.

“Our hospital has been on its own journey toward greater diversity, equity and inclusion (DEI) since the early 2000s,” says Denice Cora-Bramble, M.D., M.B.A., chief diversity officer at Children’s National. “Over the past two years we have expanded the scope of our DEI work, which included assessing and improving the care to LGBTQ+ patients as well as the work environment for LGBTQ+ staff. Our improvement efforts are being recognized by this designation.”

The HEI evaluates and scores health care facilities on detailed criteria falling under four central pillars:

  • Foundational Policies and Training in LGBTQ+ Patient-Centered Care
  • LGBTQ+ Patient Services and Support
  • Employee Benefits and Policies
  • Patient and Community Engagement

“Every person deserves to have access to quality health care, be respected and heard by their doctor and feel safe in the facility where they are receiving care. But LGBTQ+ people are often subject to discrimination in all spaces, including health care facilities, which leads to members of the community avoiding care and anticipating our voices will not be respected in an incredibly vulnerable environment,” said Tari Hanneman, director of Health & Aging at The Human Rights Campaign. “The HEI, at its core, strives to ensure LGBTQ+ people are protected and affirmed by their health care providers and feel safe seeking services. Our active participants are truly pioneering the health care industry by implementing robust, comprehensive LGBTQ+ inclusive policies that hopefully, because of their work, will become standard practice.”

In addition to active survey participants, the Human Rights Campaign Foundation proactively researched the key policies for LGBTQ+ inclusion at over 1,300 non-participating hospitals. Those hospitals were much less likely to have LGBTQ+ non-discrimination policies in place, which is a stark contrast to the near-perfect adoption by active participants. Among the researched hospitals, in which the Human Rights Campaign Foundation was able to find or obtain enumerated patient non-discrimination policies, only 70% have policies that include both sexual orientation and gender identity compared to 99% of HEI participants.

“We are designing effective, data-driven and responsive programs that will lead to a more diverse, equitable and inclusive workplace,” says George Francois, M.B.A., executive director of the Center for Cancer and Blood Disorders and chair of the Children’s National DEI Program’s LGBTQ+ sub-committee. Francois was a driving force behind the improvement efforts. “More importantly, we are determined to ensure the continued delivery of high-quality health care services to all patients.”

Anitha John

Youth with heart defects need a smooth transition to age-appropriate heart care, says AHA

Anitha John

Anitha John, M.D., Ph.D., director of the Washington Adult Congenital Heart Program (WACH) at Children’s National Hospital and incoming chair of the AHA Young Hearts council, served as lead author on the statement, which provides the latest evidence-based best practices for a successful transition from pediatric care to adult care.

The American Heart Association (AHA) issued a scientific statement capturing the best practices for helping children with congenital heart disease successfully transition to adulthood and receive health care tailored to their needs as they continue to age. Ensuring a smooth and supported transition and establishing relationships with these young patients as they grow into adults is key to maintaining their engagement and connection to health care decisions that will improve their long-term health and well-being.

Anitha John, M.D., Ph.D., director of the Washington Adult Congenital Heart Program (WACH) at Children’s National Hospital and incoming chair of the AHA Young Hearts council, served as lead author on the statement, which provides the latest evidence-based best practices for a successful transition from pediatric care to adult care. This work is critical given that today, thanks to the tremendous advances in care and treatment of congenital heart defects in the last two decades, there are more adults living with congenital heart conditions than children.

What this means

The AHA describes a scientific statement as an “expert analysis of current research” that “can inform future care guidelines.” This scientific statement demonstrates the scientific evidence supporting what adult congenital heart specialists have advised for years—that making sure children with congenital heart defects continue to stay engaged in their care and actively seek out health care specialized for them as they grow through adolescence and into adulthood is critical. Keeping that connection plays a pivotal role in their overall quality of life as they age.

Why it matters

Treatments and care for children with congenital heart defects has improved so greatly that, according to the AHA, “most people born with heart defects today, including those with complex heart conditions, survive past childhood and become adults.” But the same care they received as children is not enough to address their needs as adults. Adult-oriented congenital heart care can be the difference between a long and healthy life or continued health challenges and dangerous side effects. Adults with congenital heart conditions should seek out care that serves them best, and it should be accessible to everyone who needs it.

By issuing this updated scientific statement, the AHA is broadcasting the important take home message that adults with congenital heart disease and their care providers need (and should seek) access to an adult-focused program with expertise in caring for the unique challenges they face. Establishing that connection at the transition point from adolescence to adulthood can set the stage for long term engagement and health.

Children’s National Hospital leads the way

As director of the WACH program at Children’s National, Dr. John is one of the nation’s experts in care for adults living with congenital heart disease. She also leads significant patient-centered research efforts focused on understanding barriers to care and other challenges faced by these adult heart patients, including serving as co-principal investigator on one of the largest patient-centered studies of adults living with congenital heart disease, supported by the Patient-Centered Outcomes Research Institute (PCORI). The findings from these studies will help fuel further recommendations and guidelines that will improve the standards of care for these patients.

Read the AHA News overview of the Scientific Statement.

Read the Scientific Statement from the Journal of the American Heart Association.

emergency signs

Social risk interventions significantly reduce asthma-related ED visits

emergency signs

In a systematic review and meta-analysis published in JAMA Pediatrics, researchers at Children’s National Hospital found that interventions focused on health, environment and community were associated with the greatest reduction in asthma-related emergency department visits and hospitalizations among children.

In a systematic review and meta-analysis published in JAMA Pediatrics, researchers at Children’s National Hospital found that interventions focused on health, environment and community were associated with the greatest reduction in asthma-related emergency department visits and hospitalizations among children. The findings suggest that addressing social risks may be a crucial component of pediatric asthma care to improve health outcomes.

“There are persistent and striking disparities in asthma outcomes among children,” said Jordan Tyris, M.D., hospitalist fellow at Children’s National and lead author. “Understanding how to address these is of utmost importance.”

“Literature on the spectrum of social factors, including social needs, social risks and social determinants, has increased recently across many aspects of health care,” adds Dr. Tyris. “But much of this literature has focused on adults with chronic conditions, for example diabetes or high blood pressure.”

The study authors searched PubMed, Scopus, PsychINFO, SocINDEX and CINAHL from January 2008 to June 2021 for U.S.-based studies evaluating the associations of interventions addressing one or more social risks with asthma-related emergency department visits and hospitalizations among children. The systematic review included 38 of the original 641 identified articles (6%), and the meta-analysis included 19 articles (3%). Overall, participation in social risk–based interventions, particularly those that addressed health literacy, home environmental conditions and peer support were associated with significantly reduced risks for asthma-related emergency department visits and hospitalizations among children.

You can read the full study, “Social Risk Interventions and Health Care Utilization for Pediatric Asthma: A Systematic Review and Meta-analysis” in JAMA Pediatrics.

kale at the food pharmacy

Capital Area Food Bank and Children’s National launch food pharmacy program

kale at the food pharmacy

The goal of the food pharmacy program is to improve patient health by creating easy access to foods that help with the management of diabetes, and to reduce barriers to routine attendance at clinic appointments by co-locating food assistance with medical care.

Capital Area Food Bank and Children’s National Hospital launched a pilot program, hosted by the Diabetes and Endocrinology teams at Children’s National, that will enable children with prediabetes and diabetes who are experiencing food insecurity to leave their visits with nutritious groceries from an on-site “food pharmacy.”

“We know that good food and good health are deeply interconnected, especially for young people,” said Radha Muthiah, president and CEO of the Capital Area Food Bank. “For children whose families may not always have the resources to get a nutritious meal on the table, all kinds of health challenges can emerge, including diabetes. We’re proud to be partnering with Children’s National on an initiative that will enable brighter futures for kids by making healthy groceries available right at the point of care.”

The goal of the food pharmacy program is to improve patient health by creating easy access to foods that help with the management of diabetes, and to reduce barriers to routine attendance at clinic appointments by co-locating food assistance with medical care. Children diagnosed with prediabetes or diabetes (Types 1 and 2) who also screen positive for food insecurity are given a prescription for medically-tailored groceries, which can be filled immediately on site. The supply includes both produce and shelf-stable items. Families are also provided with information about where to find additional help obtaining food, along with nutrition education materials.”

Rates of type 2 diabetes and prediabetes in children have been rapidly increasing in the past years, partly a consequence of the epidemic of childhood obesity. These conditions disproportionally impact children of African and Hispanic descent and those coming from low-income families, according to Elizabeth Estrada, M.D., director of the Type 2 Diabetes Program at Children’s National Hospital.

“Healthy eating is crucial in the treatment and prevention of these conditions, but many of our families lack access to nutritious food,” said Dr. Estrada. “The partnership with the Capital Area Food Bank to establish a food pharmacy within the diabetes clinic allows us to not only help our patients and families with recommendations for healthy eating, but also provides them with the foods they need to prepare nutritious meals.”

Through the initiative, the Capital Area Food Bank and Children’s National aim to reach up to 120 unique families per month, providing each household with 35 pounds of food per visit over the course of a year.

Little boy going to school with protective mask

Pandemic recovery for kids goes well beyond keeping schools open

Little boy going to school with protective maskThe impact virtual school had on kids goes well beyond academics, say Children’s National Hospital experts in a new JAMA Pediatrics editorial. From the beginning of the pandemic, new data shows that school closures for in-person learning led to:

  • School disengagement
  • Mental health challenges
  • Unhealthy weight gain
  • Food insecurity
  • Immunization delay
  • An increase in cases of new-onset Type 2 diabetes

“The toll that school closures and social isolation has had on kid’s mental health cannot be overstated,” says Danielle Dooley, M.D., M.Phil., medical director of Community Affairs and Population Health in the Child Health Advocacy Institute at Children’s National Hospital. “As the latest Omicron wave has shown, these discussions are not behind us. We must continue to fully weigh how each decision can impact the lives of children.”

She collaborated with other Children’s National experts in the new editorial. They discussed how Viner et al. a study appearing in the same issue present an important review of the impacts of school closures. The researchers urge a balance between measures to contain COVID-19 and to support the physical and mental health of kids.

“The events and influences in childhood and adolescence have long-lasting impacts on the health and well-being of youth,” says Dr. Dooley.

Danielle Dooley

In a new editorial, Dr. Dooley et al. stress the importance of children remaining the focus of the ongoing pandemic and recovery.

Looking at the prospect of COVID-19 becoming endemic in our communities, Dr. Dooley stressed the importance of continually assessing the impact of the pandemic on youth. This includes the impact of the pandemic on education, health care access and disparities, family stress and functioning, among others.

In the editorial, Dr. Dooley et al. say changes need to be made at the practice, research, policy, systems and school infrastructure level. They write that while children are resilient, that resiliency requires systemic support, investment and more research into the short-, medium-, and long-term impacts on kids.

Children’s National Hospital continues to be a leader in addressing these impacts. From clinical care to partnerships and collaboration with local school systems and community-based organizations, Children’s National takes a holistic approach to the needs of children and families. Additionally, with funding from the United Health Foundation, Children’s National has deployed its Mobile Medical Unit. The clinic meets families where they are, in their communities, to deliver immunization services and comprehensive well visits to children and adolescents.

Hope Rhodes, M.D., M.P.H., medical director for the Mobile Medical Program at Children’s National, says, “This is a critical part of the pandemic response, both to ensure children do not fall further behind in immunizations and to provide additional access point options for families to receive immunizations.”

Drs. Katie Donnelly, Panagiotis Kratimenos, Rana Hamdy, Shayna Coburn and Brynn Marks

Five Children’s National Hospital faculty named to Society for Pediatric Research

Drs. Katie Donnelly, Panagiotis Kratimenos, Rana Hamdy, Shayna Coburn and Brynn Marks

The Society for Pediatric Research (SPR) announced five new members from Children’s National Hospital: Drs. Rana Hamdy, Panagiotis Kratimenos, Brynn Marks, Shayna Coburn and Katie Donnelly.

The Society for Pediatric Research (SPR) announced five new members from Children’s National Hospital. Established in 1929, SPR’s mission is to create a multi-disciplinary network of diverse researchers to improve child health.

Membership in SPR is a recognized honor in academic pediatrics. It requires nomination by academic peers and leaders as well as recognition of one’s role as an independent, productive child health researcher.

“I am so proud of our faculty and all that they have accomplished. I am thrilled that they have been recognized for their achievements,” said Beth A. Tarini, M.D., M.S., SPR president and associate director for the Center for Translational Research at Children’s National Hospital.

SPR 2021 active new members from Children’s National are:

    • Katie Donnelly, M.D., M.P.H., attending physician in the Emergency Department at Children’s National Hospital. She is the medical director for Safe Kids DC, an organization dedicated to preventing accidental injuries in children in Washington DC. Her personal research interest is in preventing firearm injuries in children and she is a member of Safer through Advocacy, Firearm Education and Research (SAFER), a multidisciplinary team dedicated to firearm injury prevention at Children’s National. She is also the medical director of the newly founded hospital-based violence intervention program at Children’s National and an associate professor of pediatrics and emergency medicine at The George Washington University.“To be recognized by my peers as a researcher with a significant contribution to our field is very validating. It also opens a world of potential collaborations with excellent scientists, which is very exciting!” said Dr. Donnelly. “I am grateful for the immense support offered to me by the Division of Emergency Medicine to complete the research I am passionate about, especially my mentor Monika Goyal.”
    • Panagiotis Kratimenos, M.D., Ph.D., newborn intensivist and neuroscientist at Children’s National. He studies mechanisms of brain injury in the neonate, intending to prevent its sequelae later in life. Dr. Kratimenos’ interest lies in identifying therapies to prevent or improve neurodevelopmental disabilities of sick newborns caused by prematurity and perinatal insults.“Being a member of SPR is a deep honor for me. SPR has always been a ‘mentorship home’ for me since I was a trainee and a member of the SPR junior section,” said Dr. Kratimenos. “A membership in the SPR allows us to access a very diverse, outstanding team of pediatric academicians and researchers who support the development of physician-scientists, honors excellence through prestigious grants and awards, and advocates for children at any level either locally, nationally, or internationally.”
    • Rana Hamdy, M.D., M.P.H., M.S.C.E., pediatric infectious diseases physician at Children’s National and Director of the Antimicrobial Stewardship Program. She is an assistant professor of pediatrics at George Washington University School of Medicine and Health Sciences. Her area of expertise focuses on the prevention and treatment of antimicrobial resistant infections and the promotion of good antimicrobial stewardship in inpatient and outpatient settings.“It’s an honor to be joining the Society for Pediatric Research and becoming part of this distinguished multidisciplinary network of pediatric researchers,” said Dr. Hamdy. “I look forward to the opportunity to meet and work with SPR members, make connections for future collaborations, as well as encourage trainees to pursue pediatric research through the opportunities that SPR offers.”
    • Shayna Coburn, Ph.D., director of Psychosocial Services in the Celiac Disease Program at Children’s National. She is a licensed psychologist specializing in coping and interpersonal relationships in chronic illness treatment, particularly for conditions involving specialized diets. She holds an appointment as assistant professor of psychiatry and behavioral sciences at The George Washington University School of Medicine and Health Sciences. Her work has focused on promoting effective doctor-patient communication, reducing healthcare disparities and supporting successful adherence across the developmental span of childhood and adolescence. She currently has a Career Development Award from National Institute of Diabetes and Digestive and Kidney Diseases to refine and test a group intervention designed to improve self-management and quality of life in teens with celiac disease.
      “I hope that my background as a psychologist researcher will help diversify SPR. As an SPR member, I hope to encourage more opportunities for training, awards, and other programs that would be inclusive of clinician researchers who may not hold a traditional medical degree,” said Dr. Coburn.
    • Brynn Marks, M.D., M.S.-H.P.Ed., endocrinologist at Children’s National. As a clinical and translational scientist her goal is to use unique personal experiences and training to optimize both patient and provider knowledge of and behaviors surrounding diabetes technologies thereby realizing the potential of diabetes technologies improve the lives and clinical outcomes of all people living with diabetes. Her experiences as a person living with Type 1 diabetes have undoubtedly shaped her clinical and research interests in diabetes management and medical education.
      “It is an honor to be accepted for membership in the Society for Pediatric Research,” said Dr. Marks.  “Being nominated and recognized by peers in this interprofessional pediatric research community will allow me networking and growth opportunities as I continue to advance my research career.”
doctor taking blood sample from child

Study shows increase in diabetes cases during COVID-19 pandemic

doctor taking blood sample from child

A retrospective study found pediatric Type 1 diabetes cases rose 15.2% and Type 2 diabetes cases increased by 182% during the first year of the COVID-19 pandemic compared to the prior two years— affecting non-Hispanic Black youth the most.

While the effects of COVID-19 on diabetes-related outcomes are extensively studied in adults, data about the incidence and severity of presentation of pediatric new-onset Type 1 diabetes (T1D) and Type 2 diabetes (T2D) is limited. A new retrospective study of 737 youth diagnosed with diabetes at Children’s National Hospital between March 11, 2018 and March 10, 2021 found pediatric T1D cases rose 15.2% and T2D cases increased by 182% during the first year of the COVID-19 pandemic compared to the prior two years — affecting non-Hispanic Black youth the most.

The study, published in Hormone Research in Paediatrics, compared T1D and T2D cases during the first 12 months of the pandemic, between March 11, 2020 and March 10, 2021, to the same time in the previous two years. This increase in cases was accompanied by a nearly six-fold rise in diabetic ketoacidosis (DKA) and a 9.2% incidence of hyperosmolar DKA during the pandemic as compared to no cases in the two years prior.

“A better understanding of the impact of the COVID-19 pandemic is crucial for raising public awareness, shaping policy and guiding appropriate health screenings,” said Brynn Marks, M.D., M.S.H.P.Ed., endocrinologist at Children’s National and lead author of the study.

Children’s National provides clinical care to approximately 1,800 youth with T1D and 600 youth with T2D annually. In the two years before the pandemic, cases of T2D accounted for 25.1% of all newly diagnosed diabetes at Children’s National compared to 43.7% during the pandemic. Before the pandemic, females accounted for 59.6% of youth with new-onset T2D but 58.9% of new-onset T2D cases were among males during the pandemic.

The researchers noted that the rise in cases of T2D and severity of presentation of both T1D and T2D during the pandemic disproportionately impacted non-Hispanic Black youth (NHB). NHB youth accounted for 58% of cases of T2D pre-pandemic, which further increased to 77% during the pandemic. The findings also showed that cases of DKA among NHB youth newly diagnosed with T1D increased during the pandemic compared to the two years before (62.7% vs. 45.8%, p=0.02).  Before the pandemic, there was no significant difference in A1c at T1D diagnosis between racial and ethnic groups. However, during the pandemic, hemoglobin A1c levels were higher among NHB youth.

“Future studies are needed to understand the root cause of the disproportionate impact of the COVID-19 pandemic on non-Hispanic Black youth with newly diagnosed diabetes,” said Dr. Marks. “These outcomes during the pandemic will likely worsen pre-existing health care disparities among youth with diabetes.  In understanding the indirect effects of our response to the pandemic, we can better inform future emergency responses and develop strategies to improve outcomes for all youth living with diabetes.”

boy getting covid test

Sentiments about COVID-19 testing among Black parents in the United States

boy getting covid test

An analysis led by Sarah Schaffer DeRoo, M.D., found that knowledge, attitudes and beliefs about COVID-19 testing plays a key role in preventing COVID-19 transmission among Black parents.

Black-majority communities have been disproportionately affected by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections, hospitalizations and deaths. As of September 2021, Black Americans had nearly three times the hospitalization rate and double the death rate due to coronavirus disease 2019 (COVID-19), as compared to White Americans.

An analysis led by Sarah Schaffer DeRoo, M.D., pediatrician at Children’s National Hospital, aimed to characterize knowledge, attitudes and beliefs about COVID-19 testing – a key tool for preventing COVID-19 transmission – among Black parents.

Semi-structured interviews were conducted and analyzed using a phenomenology approach with 26 self-identified Black parents after telemedicine visits with a children’s health center. Three central themes emerged regarding COVID-19 testing decision-making, including perceived COVID-19 disease susceptibility, barriers to testing and cues to action. Parents were keen to pursue testing to ensure the safety of themselves and their loved ones, especially if they perceived a high risk for COVID-19 infection, such as due to a known positive contact. However, barriers to testing for some parents included concerns about accuracy and safety of the tests, as well as possible stigma associated with a positive test result. Parents also shared their concern that a positive test result would not be met with an appropriate medical response due to structural racism in the health care system, making some reluctant to pursue testing.

“When considering the themes that emerged from these interviews, we were able to better understand Black Americans’ views of COVID-19 testing and motivations for accessing testing,” says Dr. Schaffer DeRoo. “Culturally responsive educational campaigns delivered by trusted community members should aim to improve understanding about disease transmission and testing.”

Framing testing as a means to ensure safety and acknowledging and addressing institutionalized racism that affects COVID-19 care may improve self-efficacy to obtain testing. “The health community should learn from these conversations with Black Americans so that disease prevention and mitigation strategies prioritize health equity,” says Dr. Schaffer DeRoo.

Dr. Sable performing an echocardiogram in Uganda

Penicillin slows impacts of rheumatic heart disease in Ugandan children

Dr. Sable performing an echocardiogram in Uganda

“We know from previous studies that though it is not always well-documented, sub-Saharan Africa continues to have some of the highest numbers of people with rheumatic heart disease and the highest numbers of people dying from it,” said Craig Sable, M.D., associate chief of Cardiology at Children’s National Hospital and co-senior author of the study. “This study is the first large-scale clinical trial to show that early detection coupled with prophylactic treatment of penicillin is feasible and can prevent rheumatic heart disease from progressing and causing further damage to a child’s heart.”

Penicillin, a widely available and affordable antibiotic, may be one key to turning the tide on the deadly impacts of rheumatic heart disease (RHD) for children in developing nations. This according to the new findings of a large-scale, randomized controlled trial completed in Uganda and published in the New England Journal of Medicine.

The most devastating feature of RHD is severe heart valve damage that is caused by rheumatic fever — a condition that results from the body’s immune system trying to fight poorly treated, repeat infections from streptococcus bacteria, also known as strep throat. Though widely eradicated in nations such as the United States due to the swift detection and treatment of strep throat, rheumatic fever remains prevalent in developing countries including those in sub-Saharan Africa. Current estimates are that 40.5 million people worldwide live with rheumatic heart disease, and that it kills 306,000 people every year. Most of those affected are children, adolescents and young adults under age 25.

“We know from previous studies that though it is not always well-documented, sub-Saharan Africa continues to have some of the highest numbers of people with rheumatic heart disease and the highest numbers of people dying from it,” said Craig Sable, M.D., associate chief of Cardiology at Children’s National Hospital and co-senior author of the study. “This study is the first large-scale clinical trial to show that early detection coupled with prophylactic treatment of penicillin is feasible and can prevent rheumatic heart disease from progressing and causing further damage to a child’s heart.”

The study was led by an international panel of pediatric cardiac experts from institutions including Children’s National, Cincinnati Children’s Medical Center, the Uganda Heart Institute and Murdoch Children’s Research Institute in Melbourne, Australia.

“Our study found a cheap and easily available penicillin can prevent progression of latent rheumatic heart disease into more severe, irreversible valve damage that is commonly seen in our hospitals with little or no access to valve surgery,” said co-lead author Emmy Okello, M.D., chief of Cardiology at the Uganda Heart Institute.

To Andrea Beaton, M.D., associate professor of Cardiology at Cincinnati Children’s and co-lead author, this is the first contemporary randomized controlled trial in rheumatic heart disease. “The results are incredibly important on their own, but also demonstrate that high-quality clinical trials are feasible to address this neglected cardiovascular disease,” she said.

Beaton et al. named the trial Gwoko Adunu pa Lutino (GOAL), which means “protect the heart of a child.” The study enrolled 818 Ugandan children and adolescents ages 5 to 17 years old who were diagnosed with latent rheumatic heart disease to see if an injection of penicillin was effective at preventing their heart condition from worsening.

“There are many challenges with recruitment and retention of trial participants in areas like our study region in Uganda,” said Dr. Sable. “But it is critical to work together and overcome barriers, because we must study these treatments in the people most affected by the condition to understand how they, and others like them, may benefit from the findings.”

Of the 799 participants who completed the trial, the group receiving a prophylactic injection of penicillin (399 volunteers) had three participants show evidence of worsened rheumatic heart disease on repeat echocardiogram after two years. In contrast, 33 of the 400 volunteers in the control group, who received no treatment, showed similar progression on echocardiogram results.

Professor Andrew Steer, who is theme director of Infection and Immunity at Murdoch Children’s Research Institute in Melbourne and who served as senior author of the study, said screening for latent rheumatic heart disease was critical to stop progression because heart valve damage was largely untreatable. “Most patients are diagnosed when the disease is advanced and complications have already developed. If patients can be identified early, there is an opportunity for intervention and improved health outcomes.”

The results were shared in a special presentation at the American Heart Association’s Scientific Sessions on the same day that the findings were published in the New England Journal of Medicine.

The trial was supported by the Thrasher Pediatric Research Fund, Gift of Life International, Children’s National Hospital Foundation: Zachary Blumenfeld Fund, Children’s National Hospital Race for Every Child: Team Jocelyn, the Elias/Ginsburg Family, Wiley-Rein LLP, Phillips Foundation, AT&T Foundation, Heart Healers International, the Karp Family Foundation, Huron Philanthropies and the Cincinnati Children’s Hospital Heart Institute Research Core.

Learn more about the challenges of rheumatic heart disease in sub-Saharan Africa and other developing parts of the world through the Rheumatic Heart Disease microdocumentary series:

sick child in palliative care hospital bed

New study compares first and second wave of MIS-C

sick child in palliative care hospital bed

When comparing the first and second wave of patients diagnosed with multi-system inflammatory syndrome in children (MIS-C), the second wave patients had more severe illness, according to a new prospective cohort study at Children’s National Hospital in Washington, D.C.

When comparing the first and second wave of patients diagnosed with multi-system inflammatory syndrome in children (MIS-C), the second wave patients had more severe illness, according to a new prospective cohort study of 106 patients at Children’s National Hospital in Washington, D.C. The results, published in The Pediatric Infectious Disease Journal, show that despite increased severity in the second wave cohort, both cohorts had similarities in cardiac outcomes and length of stay. Researchers are still working to better understand the exact immunologic mechanisms that trigger MIS-C and the specific factors accounting for its rare occurrence.

“We’ve now seen three distinct waves of MIS-C since the beginning of the pandemic, each wave following national spikes in cases,” said Roberta DeBiasi, M.D., chief of the Division of Pediatric Infectious Diseases at Children’s National and co-author of the study. “Kids in the second wave cohort had potentially experienced intermittent and/or repeated exposures to the virus circulating in their communities. In turn, this may have served as repeated triggers for their immune system which created the more severe inflammatory response.”

In this new study, key demographic features Children’s National researchers previously identified held true across both waves – including the fact that Black and Latino children are significantly more affected than white children.  Of the 106 patients, 54% were Black and 39% were Hispanic. The authors also noted that 75% of the patients were otherwise healthy children with no underlying medical conditions.

“While we believe the most recent third wave associated with the delta variant surge is tapering off, the findings from the first two waves provide important baseline information and are highly relevant for clinicians across the country that are evaluating and treating kids with MIS-C,” said Dr. DeBiasi.

Children’s National has cared for more than 4,200 symptomatic patients with SAR-CoV-2 infection and more than 185 MIS-C patients since the pandemic began. The first wave of MIS-C patients were hospitalized between March 2020 and October 2020. Second wave patients were hospitalized between November 2020 and April 2021. Each wave came 4-6 weeks following periods of COVID-19 surges in the community.

In the study, researchers compared patient demographics, clinical features, laboratory results, radiographic images, therapies and outcomes. The second wave cohort had a higher proportion of children 15 years of age or older. Patients also presented more frequently with shortness of breath and required more advanced respiratory and inotropic support. Researchers also found that patients in the second wave were less likely to test positive for SARS-CoV-2 on a PCR test.

Dr. DeBiasi and her team hope to unlock even more insights as they now analyze data from the third wave associated with the delta variant, which currently appears to have affected less children than the previous two. Children’s National is also working in collaboration with the National Institute of Allergy and Infectious Diseases (NIAID) to study the long-term effects of MIS-C and COVID-19 on the pediatric population after recovery. This is among the largest and longest studies being conducted, and researchers are hopeful the findings will help improve treatment of COVID-19 and MIS-C in the pediatric population both nationally and around the world.

“Our timely established multidisciplinary MIS-C task force here at Children’s National allowed us to reduce the learning curve,” said Ashraf S. Harahsheh, M.D., F.A.A.P., F.A.C.C., director of Quality Outcomes in Cardiology and co-first author of the study. “Experience from other centers showed that immunotherapy was utilized more frequently in recent MIS-C cohorts leading to reduction in percentage of cardiac complications. On the other hand, and despite having increased illness severity in the second cohort, our approach with prompt immunotherapy helped stabilize the rate of cardiac complications.”

happy children running with kite

Children’s National receives United Health Foundation grant

happy children running with kite

The grant enables a unique program – bringing together a team of school nurses in D.C. Public Schools, community health workers and mobile medical services.

The United Health Foundation, the philanthropic foundation of UnitedHealth Group, has awarded a three-year, $3.4 million grant to Children’s National Hospital to improve access to health care for school-aged children in Washington, D.C.’s most under-resourced communities. The support is part of the United Health Foundation’s ongoing commitment to build healthier communities and advance health equity.

The grant enables a unique program – bringing together a team of school nurses in D.C. Public Schools, community health workers and mobile medical services. Wards 7 and 8 face some of the largest health inequities in Washington, D.C., with high rates of child poverty, asthma, obesity and more.

“Children’s National has long worked to make sure every child in our region has access to high-quality care,” said Kurt Newman, M.D., president and CEO of Children’s National. “This new grant from the United Health Foundation will help us create another way to connect our pediatric experts with children and families who are not currently being served by health care providers. We are committed to helping children lead healthier lives which, in turn, makes them more likely to succeed in school and lead healthier lives as adults.”

School nurses employed by Children’s School Services will work with community health workers to connect children and families to mobile health services, Children’s National primary care locations and federally qualified health centers. Health records, immunization records and attendance data will be accessible through data sharing. As a result of the effort, children will receive well-child visits, including vaccinations and vision, hearing, behavioral health and developmental screenings. Additionally, via telemedicine, community health workers can link children to specialists to address behavioral health, asthma and other pressing health needs.

“Reaching school-aged children living in under-resourced communities to provide important routine health care can be challenging, especially amid a pandemic,” said Dr. Margaret-Mary Wilson, associate chief medical officer for UnitedHealth Group. “We are so pleased to be working with Children’s National on this innovative and comprehensive program to identify and close gaps in care — especially for those who have unaddressed needs.”

The effort aims to reduce school absenteeism among chronically absent students by connecting families to health supports and social services. It will also focus on increasing the number of children who are up to date on vaccinations, with a goal of providing 6,000 vaccinations over three years. Additionally, those who screen positive for mental or behavioral health issues will be referred to mental health specialists. The program is under the leadership of Hope Rhodes, M.D., M.P.H., medical director of THEARC, and one of the leaders of the Goldberg Center, and Danielle Dooley, M.D., M.Phil., medical director, Community Affairs and Population Health of the Child Health Advocacy Institute.

The grant will help address challenges identified in the Foundation’s recently released America’s Health Rankings 2021 Health of Women and Children Report. Some of the key findings of the report were:

  • Anxiety among children ages 3-17 rose 21% nationally between 2017-2018 and 2019-2020, from 7.5% to 9.1%.
  • Only 1 in 3 (34.3%) U.S. fourth grade public school students scored proficient or above on the national reading assessment. Later in life, there is a strong connection between education attainment and health, with those without a high school education facing the greatest social, economic and health challenges. National reading assessments are an important marker in educational development.
  • The prevalence of asthma among children in D.C. is 10%, higher than the national average of 7.5%.
  • On-time childhood vaccinations in D.C. are 75.3%, slightly lower than the national average of 75.8%.

The grant is one of the many ways the United Health Foundation continues to support efforts to build healthier communities and advance health equity. In September, UnitedHealth Group, including the United Health Foundation and UnitedHealthcare, announced a donation of $4.5 million to seven nonprofit organizations in Oklahoma to help increase health care, improve health outcomes and support communities across the state. And in July, the United Health Foundation established a $3.3 million grant partnership with the North Olympic Healthcare Network in Washington state to improve behavioral health for children and adults in the Port Angeles area. To learn more about UnitedHealth Group’s commitment to health equity, please visit the company’s sustainability website at sustainability.uhg.com.

 

masked kids giving thumbs up in front of school bus

Pediatricians and public health officials should unite against controversial school masking bans

masked kids giving thumbs up in front of school bus

To keep in-person learning and protect students in schools, pediatricians and public health officials must advocate for evidence-based mitigation strategies that can reduce COVID-19 transmission — especially the Delta variant, which overwhelmed pediatric emergency rooms and hospitals, argued Yang et al. in a Perspective published in the journal Pediatrics.

To keep in-person learning and protect students in schools, pediatricians and public health officials must advocate for evidence-based mitigation strategies that can reduce COVID-19 transmission — especially the Delta variant, which overwhelmed pediatric emergency rooms and hospitals, argued Yang et al. in a Perspective published in the journal Pediatrics.

The authors propose that pediatricians and their associated institutions actively advocate for masking in schools and debunk myths and misinformation during well and sick visits. In addition, they encourage doctors to develop and disseminate behavioral strategies to support children’s compliance with masking based on individual abilities and needs. Finally, providers can partner with educators at the local, district, state and national levels to advocate for evidence-based masking policies.

“As pediatricians, it is our responsibility to advocate for universal masking to facilitate safe in-person schooling for all children,” said Sarah Schaffer DeRoo, M.D., pediatrician at Children’s National Hospital and co-author of the Perspective. “Children have readily adapted to masking during the pandemic and continuing this practice in schools is not a significant change from their recent experience.”

To date, nine states have enacted policies to prohibit school masking mandates, disregarding evidence that masking is a crucial COVID-19 preventive measure, Yang et al. wrote. The court overturned these mandates in four states out of the nine because they either exceeded the governor’s executive authority or did not comply with the law granting the executive order’s authority. In other instances, judges have only placed a temporary block.

“Despite politically charged rhetoric and headline-grabbing lawsuits, evidence shows that schools without mask mandates are more likely to have COVID-19 outbreaks,” said Y. Tony Yang, Sc.D., endowed professor of health policy and executive director of the Center for Health Policy and Media Engagement at the George Washington University, and lead author of the Perspective. “Pediatricians have generally commanded a heightened level of public trust, which suggests that pediatricians who make the case for policies that advance sound medical and public health science may have a greater chance than other advocates of generating the public and political will needed to make evidence-based policy ideas, such as school mask mandates, a reality.”

Some localities have found creative ways to circumvent state mask mandate bans by altering the school dress code to include face coverings and finding loopholes that do not apply to individual cities. Parents have also tried to challenge the policies in court, asserting that mask mandate bans violate federal anti-discrimination laws.

“Continued efforts are needed to ensure schools are able to promote reasonable, evidence-based strategies to promote the health of their students, teachers and communities, and we, as advocates for children, are obligated to emphatically support these efforts,” said Yang et al.

screenshot of conversation between Dr. Beers and Simone Biles

Dr. Lee Beers speaks with Olympic gold medalist Simone Biles about mental health

Lee Savio Beers, M.D., F.A.A.P., medical director of Community Health and Advocacy at the Child Health Advocacy Institute (CHAI) at Children’s National Hospital and president of the American Academy of Pediatrics (AAP), delivered the President’s Address to AAP members around the world and held a keynote conversation with Olympic gold medalist Simone Biles about mental health during AAP’s National Conference and Exhibition.

After being introduced by her children, Charlotte and Jonah, Dr. Beers thanked AAP members around the world for their ability to adapt and provide quality care to patients throughout the COVID-19 pandemic. “The COVID-19 pandemic has changed our collective calculus of uncertainty, yet you continue to adapt and adjust to provide quality care in your clinics, emergency departments, ICU’s and exam rooms,” said Dr. Beers.

Dr. Beers continued by reflecting on accomplishments that AAP members and volunteers were able to achieve over the last year including the establishment of community immunization efforts, interim guidance provided on numerous pandemic-related issues and bi-weekly COVID-19 townhalls and educational sessions.

Shortly after her address, Dr. Beers sat down with Simone Biles to discuss the importance of advocating for mental health as an athlete.

During their conversation, Biles discussed the importance of making her mental health a priority by withdrawing from several events during the 2020 Tokyo Olympics. She reflected on the outpouring support she received and how it made her feel.

Biles also offered advice for youth dealing with mental health issues and stressed the importance of reaching out to parents or peers so they can get the help and support they need.

AAP’s National Conference and Exhibition, held from October 8 through October 11, serves as an opportunity to keep pediatric providers abreast of the latest best practices in pediatrics and strives to meet participants’ identified educational needs and support their life-long learning with a goal of improving care for children and families.

Speaker and presentation information can be found here.

screenshot of conversation between Dr. Beers and Simone Biles

Simone Biles discussed the importance of making mental health a priority with Dr. Lee Savio Beers.

illustration of lungs with coronavirus inside

Study compares outcomes of SARS-CoV-2 versus other respiratory viruses

illustration of lungs with coronavirus inside

Until now, little was known about the incidence and virus-specific patient outcome of SARS-CoV-2 compared to common seasonal respiratory viruses in children — including respiratory syncytial virus (RSV), human parainfluenza (hPIV), human metapneumovirus (hMPV), respiratory adenovirus and human rhinovirus (hHRV) and respiratory enterovirus (rENT).

Common respiratory viral infections were associated with a higher proportion of inpatient admissions but were similar in intensive care unit (ICU) admissions and death rates in hospitalized pediatric patients when compared to SARS-CoV-2, according to Children’s National Hospital researchers that led a study published in Infection Control & Hospital Epidemiology.

Until now, little was known about the incidence and virus-specific patient outcome of SARS-CoV-2 compared to common seasonal respiratory viruses in children — including respiratory syncytial virus (RSV), human parainfluenza (hPIV), human metapneumovirus (hMPV), respiratory adenovirus and human rhinovirus (hHRV) and respiratory enterovirus (rENT).

The researchers also noted that there was an overall substantial decrease in seasonal respiratory viral infections, especially the severe forms that require hospitalization. They believe that this correlation might be associated with the adoption of COVID-19 public health mitigation efforts, which played a major role in the reduction of these viruses that often circulate in fall and winter. The retrospective cross-sectional cohort study analyzed over 55,000 patient admissions between Match 15 and December 31, 2020. The findings shed light on the incidences of eight common seasonal respiratory viral infections before and during the COVID-19 pandemic. It also compared patient outcomes associated with COVID-19 and these other viral infections among pediatric patients at Children’s National.

Xiaoyan Song, Ph.D., M.Sc., chief infection control officer at Children’s National, spoke to us about the study.

Q: Why is this important work?

A: This is the first study to date that has described and compared hospitalization rates, ICU admission rates and death associated with COVID-19, RSV, seasonal influenza, rhinovirus, enterovirus and other common respiratory viral infections in children in one study. Previously, studies have compared one or two viruses at a time. This study compared 8 viruses, including the most detected ones – COVID-19, RSV, seasonal flu, rhinovirus and enterovirus.

Q: How will this work benefit patients?

A: This study will inform patients, families and the public that preventative measures like masking, hand hygiene, avoiding crowds and avoiding people who are ill are good practices that work to protect children from getting COVID-19 but also from getting infected with RSV, influenza and other viruses. Any of these respiratory viruses could harm a patient to a point where the child may have to be hospitalized or receive ICU care.

You can read the full study published in Infection Control & Hospital Epidemiology.

Drs. Wernovsky and Martin

Cardiac care leaders recognized for mentorship and innovation at AAP

Two Children’s National Hospital cardiac care leaders received prestigious recognition awards from the American Academy of Pediatrics (AAP) during that organization’s virtual National Conference and Exhibition in October 2021.

  • Gil Wernovsky, M.D., cardiac critical care specialist at Children’s National Hospital, received the 2021 Maria Serratto Master Educator Award from AAP Section on Pediatric Cardiology and Cardiac Surgery, celebrating his 30-plus-years as a clinician, educator, mentor and leader in the field.
  • Gerard Martin, M.D., FAAP, FACC, FAHA, C. Richard Beyda Professor of Cardiology, Children’s National Hospital, received the AAP Section on Advances in Therapeutics and Technology (SOATT) Achievement Award, in recognition of his work to establish the use of pulse oximetry to screen newborn infants for critical congenital heart disease in the first 24 hours of life.

Dr. Wernovsky: 2021 Maria Serratto Master Educator Award, AAP Section on Pediatric Cardiology and Cardiac Surgery

Gil Wernovsky

Gil Wernovsky, M.D., received the 2021 Maria Serratto Master Educator Award from AAP Section on Pediatric Cardiology and Cardiac Surgery.

The Master Educator Award is presented each year to a pediatric cardiologist or cardiothoracic surgeon who exemplifies excellence as an educator, mentor and/or leader in the field.

A practicing cardiac critical care specialist with more than 30 years’ experience in pediatric cardiology, Dr. Wernovsky trained and mentored more than 300 fellows in pediatric cardiology, cardiac surgery, neonatology, critical care medicine and cardiac anesthesia, in addition to countless residents and fellows. He also organizes national and international symposia to share expertise around the world. During the COVID-19 public health emergency, for example, he co-founded the Congenital Heart Academy (CHA). The CHA provides content from an international faculty of cardiac care to more than 26,000 practitioners in 112 countries and includes a thriving YouTube channel.

Dr. Wernovsky is also a founding member of several international societies focused on bringing together clinicians, researchers and students across sub-specialties of pediatric cardiology and cardiac surgery for knowledge exchange and best practice sharing. These include: the Pediatric Cardiac Intensive Care Society, World Society for Pediatric and Congenital Heart Surgery, the International Society of Pediatric Mechanical Circulatory Support and the Cardiac Neurodevelopmental Outcome Collaborative.

Dr. Wernovsky received the award on October 10 at the virtual Scientific Sessions of the 2021 American Academy of Pediatrics National Conference and Exhibition.

Dr. Martin: AAP Section on Advances in Therapeutics and Technology (SOATT) Achievement Award

Gerard Martin

Gerard Martin, M.D., FAAP, FACC, FAHA, C. Richard Beyda Professor of Cardiology, Children’s National Hospital, received the AAP Section on Advances in Therapeutics and Technology (SOATT) Achievement Award.

The Section on Advances in Therapeutics and Technology (SOATT) educates physicians, stimulates research and development and consults on therapeutics and technology-related matters for the AAP. The Achievement Award recognizes someone who has shown leadership in applying innovative approaches to solve pressing problems.

Dr. Martin is the C. Richard Beyda Professor of Cardiology and has cared for children at Children’s National for more than 30 years. As an advocate for congenital heart disease efforts nationally and internationally, he played an integral role in the development of an innovative use of existing hospital technology—the pulse oximeter—to detect critical congenital heart disease in newborn babies.

Today, Dr. Martin and colleagues across the United States and around the world have worked to make this screening method a standard of care for newborns everywhere. It is a part of the Health Resources and Services Administration (HRSA) Recommended Uniform Screening Panel and has become law in every state. They continue to conduct research to refine the recommendations and hone-in on the most effective ways to harness these tools.

Dr. Martin was selected for this award in 2020. He accepted it and offered remarks during the 2021 virtual AAP National Conference and Exhibition on Monday, October 11, 2021.

telemedicine

Children’s National Hospital technology recognized

telemedicine

Being designated with this recognition recognizes that Children’s National has deployed technologies and strategies to help analyze its data and is starting to achieve meaningful clinical and efficiency outcomes. It’s also experimenting with more advanced technologies, like telehealth, that expand access to care.

Children’s National Hospital received the 2021 Digital Health Most Wired recognition by The College of Healthcare Information Management Executives (CHIME) as a certified ambulatory level nine and acute level eight. The CHIME Digital Health Most Wired program conducts an annual survey to assess how effectively health care organizations apply core and advanced technologies into their clinical and business programs to improve health and care in their communities.

“Children’s National is honored to again receive the Most Wired distinction for our inpatient and ambulatory venues,” said Matt MacVey, chief information officer at Children’s National. “We are particularly excited to see our ongoing consumer digital experience investments propel us to a level 9 in ambulatory.”

Being designated with this recognition recognizes that Children’s National has deployed technologies and strategies to help analyze its data and is starting to achieve meaningful clinical and efficiency outcomes. It’s also experimenting with more advanced technologies, like telehealth, that expand access to care.

“Digital transformation in health care has accelerated to an unprecedented level since 2020, and the next few years will bring a wave of innovation that empowers health care consumers and will astound the industry,” said CHIME President and CEO Russell P. Branzell. “The Digital Health Most Wired program recognizes the outstanding digital leaders who have paved the way for this imminent revolution in health care. Their trailblazing commitment to rapid transformation has set an example for the entire industry in how to pursue a leadership vision with determination, brilliant planning and courage to overcome all challenges.”

A total of 36,674 organizations were represented in the 2021 Digital Health Most Wired program, which includes four separate surveys: acute, ambulatory, long-term care and international acute. The surveys assessed the adoption, integration and impact of technologies in healthcare organizations at all stages of development, from early development to industry leading.

This is the fourth year that CHIME has conducted the survey and overseen the program. In each successive year, CHIME has expanded the survey to capture more types of organizations that serve patients across the continuum of care. CHIME also continues to promote the program internationally to provide a global overview of digital health advancements.

“We are committed to investing in technology that helps us bring safe, high quality care to children,” said Jessica Herstek, M.D., chief medical informatics officer at Children’s National. “We are honored by the ‘Most Wired’ distinction and remain focused on our vision to help children grow up stronger.”

child being bullied

Food allergy-related bullying assessment methods don’t fully capture hurdles

child being bullied

When asked a simple “yes” or “no” question about food allergy-related bullying, 17% of kids said they’d been bullied, teased or harassed about their food allergy. But when asked to reply to a multi-item list of victimization behaviors, that number jumped to 31%.

Living with a food allergy can greatly impact a child’s everyday life – from limiting participation in social activities to being treated differently by peers. While previous research indicates many kids experience food allergy-related bullying, a new study in the Journal of Pediatric Psychology found that offering kids with food allergies a multi-question assessment gives a more accurate picture of the size and scope of the problem.

When asked a simple “yes” or “no” question about food allergy-related bullying, 17% of kids said they’d been bullied, teased or harassed about their food allergy. But when asked to reply to a multi-item list of victimization behaviors, that number jumped to 31%. Furthermore, Children’s National Hospital researchers found that only 12% of parents reported being aware of it.

The reported bullying ranged from verbal teasing or criticism to more overt acts such as an allergen being waved in their face or intentionally put in their food. Researchers say identifying accurate assessment methods for this problem are critical so children can get the help they need.

“Food allergy-related bullying can have a negative impact on a child’s quality of life. By using a more comprehensive assessment, we found that children with food allergies were bullied more than originally reported and parents may be in the dark about it,” says Linda Herbert, Ph.D., director of the Psychosocial Clinical and Research Program in the Division of Allergy and Immunology at Children’s National and one of the study’s researcher.

“The results of this study demonstrate a need for greater food allergy education and awareness of food allergy-related bullying among communities and schools where food allergy-related bullying is most likely to occur,” Herbert adds.

The study looked at food allergy-related bullying among a diverse patient population and evaluated parent-child disagreement and bullying assessment methods. It included 121 children and 121 primary caregivers who completed questionnaires. The children ranged in age from 9 to 15-years-old and were diagnosed by an allergist with at least one of the top eight IgE-mediated food allergies – peanut, tree nut, cow’s milk, egg, wheat, soy, shellfish and fish.

Of the 41 youth who reported food allergy-related bullying:

  • 51% reported experiencing overt physical acts such as an allergen being waved in their face, thrown at them or intentionally put in their food.
  • 66% reported bullying experiences that are categorized as non-physical overt victimization acts including verbal teasing, remarks or criticisms about their allergy and verbal threats or intimidation.
  • Eight reported relational bullying, such as rumors being spread, people speaking behind their back and being intentionally ignored or excluded due to their food allergy.

The researchers also note that food allergy bullying perpetrators included, but were not limited to, classmates and other students, and bullying most commonly occurred at school.

The authors found that only 12% of parents reported that their child had been bullied because of their food allergy and of those, 93% said their child had reported the bullying to them. Some parents reported they had been made fun of or teased themselves because of concerns about their child’s food allergy.

“It’s important to find ways for children to open up about food allergy-related bullying,” Herbert says. “Asking additional specific questions about peer experiences during clinic appointments will hopefully get children and caregivers the help and support they need.”

Research reported in this publication was supported by the National Institute of Allergy and Infectious Diseases, part of the National Institutes of Health, under Award Number K23AI130184 and National Institute on Minority Health and Health Disparities, part of the National Institutes of Health, under Award Number P20MD000198. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

RSV infected infant cells

$2.13M grant accelerates treatments for kids with Down syndrome experiencing respiratory viruses

RSV infected infant cells

Children’s National Hospital received a combined $2.13 million award from the National Institutes of Health’s (NIH) National Heart, Lung and Blood Institute to better understand the mechanisms of severe viral respiratory infections in patients with Down syndrome and to develop new diagnostic tools and innovative precision medicine approaches for this vulnerable population.

“We have a unique opportunity to discover novel targets that can treat severe viral respiratory infections, including SARS-CoV-2,” said Gustavo Nino, M.D., M.S.H.S., D’A.B.S.M., principal investigator in the Center for Genetic Medicine at Children’s National. “Part of the award will help us accelerate the development of these novel approaches to prevent severe respiratory infections caused by SARS-CoV-2 and other viruses like respiratory syncytial virus infection (RSV) in children and adults with Down syndrome.”

Lower respiratory tract infections are a leading cause of hospitalization and death in children with Down syndrome. Those children have a nine times higher risk for hospitalization and mortality due to respiratory viruses that cause lower respiratory tract infections.

Chromosome 21, which is an extra chromosome copy found in patients with Down syndrome, encodes four of the six known interferon receptors, leading to hyperactivation of interferon response in Down syndrome. With the central role of interferons focused on antiviral defense, it remains puzzling how interferon hyperactivation contributes to severe viral lower respiratory tract infections in children with Down syndrome. This is an area that the researchers will explore to better manage and treat viral lower respiratory tract infections in these patients, with the support of NIH’s INCLUDE initiative. INCLUDE provides institutions with grants to help clinical research and therapeutics to understand and diminish risk factors that influence the overall health, longevity, and quality of life for people with Down syndrome related to respiratory viruses.

“While many of the other studies focus on intellectual and other disabilities, we are exploring a novel viral respiratory infectious disease mechanism and are doing so by working directly with patients and patient-derived samples,” said Jyoti Jaiswal, M.Sc., Ph.D., senior investigator in the Center for Genetic Medicine Research at Children’s National.

Children with Down syndrome have historically been excluded in research related to airway antiviral immunity, which is a focus of this human-based transformative study to improve the health and survival of patients with Down syndrome. There is a critical need for studies that define targetable molecular and cellular mechanisms to address dysregulated antiviral responses in this patient population.

“The clinical expertise at Children’s National in studying Down syndrome and the work of our team in caring for these patients with respiratory and sleep disorders positions us well to pursue this work,” said Jaiswal. “This is further supplemented by our initial studies that have identified a novel mechanism of impaired airway antiviral responses in these patients.”

Congresswoman Eleanor Holmes Norton (D-DC) also celebrated Children’s National and its NIH research funding benefitting people with Down syndrome.

“I am pleased to congratulate Dr. Nino and staff on being the recipients of the National Heart, Lung, & Blood Institute grant. You were chosen from a competitive group of applicants and should be proud of this notable achievement,” said Norton in a letter. “By receiving this grant, you have demonstrated outstanding promise in your field. It is my hope that this grant will enable you to better the local and global community.”

sad boy holding soccer ball

Structural racism and childhood obesity epidemic in Black youth

sad boy holding soccer ball

Racism and childhood obesity are both pervasive factors adversely affecting the health and wellbeing of children and adolescents in the United States, writes Eleanor Mackey, Ph.D., psychologist at Children’s National Hospital, and others in a recent article published by Childhood Obesity.

“The association between racism and obesity has been touched upon in the literature, yet most work has focused on a few dimensions of intersectionality of these two domains at one time,” the Mackey et al. write. “The renewed focus on structural racism as the primary contributor to distress of Black individuals in the United States has highlighted the urgency of identifying the contributions of racism to the childhood obesity epidemic.”

Access the full article here.

flow chart of pulse ox study

Newborn screening for critical congenital heart disease serves as vital safety net

One of the nation’s longest-running newborn screening programs for critical congenital heart disease (CCHD) finds that screening continues to serve as a necessary tool to help identify every child with CCHD — even in states where the majority of babies are diagnosed before birth.

The screening program study findings were published in Pediatrics. The data is some of the first to provide long-term evidence for using pulse oximetry to screen newborns for critical congenital heart disease 24 hours after birth. This screening test was added to the Department of Health and Human Services Recommended Uniform Screening Panel in 2011 and is now required in all 50 states.

“This study reinforces why pulse oximetry screening for CCHD is an important tool in our arsenal to identify and treat critical congenital heart disease, and other conditions that affect the flow of oxygen throughout the body, as soon as possible,” says Bryanna Schwarz, M.D., a cardiology fellow at Children’s National Hospital and lead author. “We know that prompt, early detection and swift intervention is crucial to positive long-term outcomes for these kids.”

The team looked at the data and outcomes for all babies born throughout eight years at Holy Cross Hospital in suburban Maryland, one of the first community birthing hospitals in the country to routinely perform the screening. Over the eight-year period, 64,780 newborns were screened at the site. Of those:

  • Thirty-one failed the screening, and every baby who failed was found to have congenital heart disease or another important medical condition.
  • Twelve of the failures (38.7%) were babies with critical congenital heart disease who were not previously identified by prenatal detection.
  • Nine others (29%) had a non-critical congenital heart condition.
  • Ten additional babies (32%) had a non-cardiac condition.

The authors note that the 12 newborns with CCHD identified through pulse oximetry screening are noteworthy because they represent critical congenital heart disease cases that are not found before birth in the state of Maryland, where rates of prenatal diagnosis are relatively high. The finding indicates that screening after birth continues to play a critical role in ensuring every baby with critical congenital heart disease is identified and treated as quickly as possible.

“Holy Cross Health and Children’s National have had a decades-long relationship, as we mutually care for women and infants throughout the region. With Children’s National having the U.S. News & World Report #1 ranking Neonatology service in the nation and Holy Cross Hospital being among the top 10 hospitals for the number of babies delivered each year, we are honored to be leading together the great work that is being done to serve our health care community,” says Ann Burke, M.D., vice president of Medical Affairs at Holy Cross Hospital. “We are committed to continuing to do our part to care for women and infants, as well as contribute to the national landscape for neonatal care. We are delighted in the outcomes we have seen and look forward to continued advancement.”

In this study, infants who did not have critical congenital heart disease were considered “false positives” for CCHD. Still, every one of them was found to have another underlying condition, including non-critical congenital heart disease or non-cardiac conditions (such as sepsis and pneumonia) that would also require monitoring and treatment.

The researchers also ran a projection of recently recommended updates to the screening protocol, which include removing a second re-screen after a newborn fails the initial test, to look at whether removing the second rescreen to verify results would decrease accuracy. While the false positive rate did increase slightly from .03% to .04%, eliminating a second re-screen allowed the newborns who were identified to receive crucial care sooner without having to wait an additional hour for one more test to verify their condition.

“It’s time to stop asking if pulse oximetry is a necessary tool to detect critical heart disease in babies,” says Gerard Martin, M.D., M.A.C.C., senior author of the study and C.R. Beyda Professor of Cardiology at Children’s National Hospital. “Our focus now should be on making evidence-based refinements to the screening protocol based on collected data to ensure the process is simple, can be performed consistently and provides as accurate results as possible.”