Cardiology & Heart Surgery

Seven key takeaways from the early development and implementation of the NeuroCardiac Critical Care Program.

Sharing development of the NeuroCardiac Critical Care Program through Congenital Heart Academy

Seven key takeaways from the early development and implementation of the NeuroCardiac Critical Care Program.

Jones presented seven key takeaways from the early development and implementation of the NeuroCardiac Critical Care Program.

“Neurodevelopmental care is not a decision on a day-to-day basis. It is a series of micro-decisions embedded in our practice every single day,” says Melissa Jones, MSN, APRN, CPNP-AC, director of the NeuroCardiac Critical Care Program at Children’s National Hospital.

Several years ago, Jones and colleagues in the Cardiac Intensive Care Unit (CICU) at Children’s National launched the program, which involved team education, implementation of evidence-based best practices, research and quality improvement efforts with the goal of optimizing brain neurodevelopment for patients in cardiac intensive care.

More than 1,000 people around the world registered for a recent virtual educational webinar hosted by the Congenital Heart Academy focused on the topics of neuroprotection for children with congenital heart disease. During the webinar the team outlined the process and lessons learned from developing this important, novel program.

What it is

The NeuroCardiac Critical Care Program at Children’s National is an integrated, multidisciplinary group of clinicians focused on eliminating secondary brain injury, optimizing brain development and promoting healthy family bonding in the CICU.

The team prioritizes several key areas, including:

  • Weekly neurodevelopmental rounds
  • Environmental changes
  • Pain and sedation management
  • Parent and caregiver engagement
  • Neuromonitoring guidelines

Jones presented the multidisciplinary team-oriented approach that led to the launch of the program, which continues to evolve and grow in the CICU today. She also offered a series of lessons learned, such as:

  • Even the patients who are the most fragile can receive developmentally supportive care.
  • Elevating and disseminating the expertise of the team is key.
  • Continuous staff educations and buy-in is essential.
  • Working with existing resources (people and material) is important.
  • Early and small wins can build traction for the team.
  • Taking care of parents is developmental care.
  • Culture change takes time, patience and persistence.

Children’s National leads the way

Children’s National is a national leader in the study of neurodevelopment across the lifespan of children born with congenital heart disease. This includes cutting edge work to understand the fetal brain, earlier diagnosis and intervention for heart disease and how congenital heart anomalies affect growth and development in utero, studies of neuroprotection strategies for use in the operating room, neurologically supportive approaches in cardiac critical care, and neuropsychological support systems as these children grow up and into adulthood.

Cardiac critical care and telehealth experts at Children’s National have been longstanding contributors to the knowledge sharing efforts of the Congenital Heart Academy from its beginning, including leading a precursor international, multi-disciplinary knowledge sharing telehealth series for critical care strategies started during the COVID-19 pandemic.

Watch the webinar: Development of the NeuroCardiac Critical Care Program

the CICU telehealth command center at Children's National

New evidence: Virtual and AI support predict and prevent cardiac arrest

the CICU telehealth command center at Children's National

An evolving, continuous surveillance telecritical care model in the pediatric Cardiac Intensive Care Unit (CICU) at Children’s National Hospital has demonstrated early findings pointing to its ability to act as an additional virtual layer of safety for patient care that supports bedside providers by identifying concerning health trends based on a patient’s data.

Children who are hospitalized with congenital heart disease are more likely to experience cardiac arrest than children without cardiovascular diseases. Though these children are more likely to survive cardiac arrest today than a decade ago thanks to improvements in treatment options, survival after a cardiac arrest while in the hospital is still low. Additional solutions to minimize this serious complication are sorely needed.

An evolving, continuous surveillance telecritical care model in the pediatric Cardiac Intensive Care Unit (CICU) at Children’s National Hospital has demonstrated early findings pointing to its ability to act as an additional virtual layer of safety for patient care that supports bedside providers by identifying concerning health trends based on a patient’s data. The model aims to minimize cardiac arrest, ensure clear and effective communication, support escalation of care when appropriate and – simultaneously – be minimally disruptive to the bedside teams’ workflow.

What this means

The Board of Visitors Telehealth Command Center, housed within the CICU at Children’s National, recently reported its initial experience after its first four years of operation, successfully conducting 18,171 virtual surveillance activities on children admitted to its CICU –  analyzing data from remote monitoring, video camera feed from patient rooms, data from electronic medical records and an artificial intelligence (AI) prediction tool dashboard. This work led to 248 critical communications with bedside teams, who subsequently provided interventions that may have prevented or decreased the severity or length of time of a patient’s cardiac arrest.

This study showed that the models tested in this large dataset have successfully blended AI and remote clinician expertise to capture concerning trends in the health of critically ill pediatric patients and then share vital information with bedside care providers. The study also shows the importance of adapting any telecritical care system to ensure it works in concert with highly trained professionals. These professionals rightly remain the first line of defense against any concerning trend in a patient’s status.

Children’s National leads the way

This is the first report in the pediatric critical care setting using a continuous care model to support a pediatric CICU to prevent cardiac arrest in children with critical heart disease. Most previous reports of telecritical care in children describe a model based on physician-to-physician communication used to connect rural and isolated populations or international cases, with clinical expertise provided from a remote distance.

What’s next

  • Ongoing research is being conducted to explore direct connections between tele-critical care communications and patient outcomes, such as reducing cardiac arrest in children after congenital heart surgery.
  • Continued refinement of virtual surveillance workflows and AI tools will allow for earlier detection, communication and intervention – in the hopes of identifying concerning trends earlier and intervening sooner.
  • Development of automated triggers for virtual surveillance and communications, helped by more AI tools, to remove the need for the personal assessment of a physician or nurse at the tele-critical care unit to trigger communications.

Read the study in Telemedicine & e-Health: Pediatric Tele-Critical Care: Initial Experience with a Continuous Surveillance Model Aiming to Prevent Cardiac Arrest in Children with Critical Heart Disease.

winners of the pediatric medical device competition

Winners announced in pediatric medical device competition focused on cardiology

winners of the pediatric medical device competitionSix medical technology innovators focused on pediatric cardiology were selected to receive grants of $50,000 each in the “Make Your Medical Device Pitch for Kids!TM” competition in Toronto. The funds will help awardees bring their devices to the market and improve care for children with heart conditions.

The awardees, selected from a highly competitive field of ten finalists, are:

  • Bloom Standard, Minneapolis – Autonomous, hands-free ultrasound
  • Compremium AG, Bern, Switzerland – Noninvasive central venous pressure estimation for pediatric patients
  • Massachusetts Institute of Technology, Cambridge, Mass. – Polymeric auxetic stent to treat pediatric aortic coarctation
  • OxiWear, Arlington, Va. – Home measurement of oxygen levels in pediatric congenital heart disease
  • PyrAmes Inc., Cupertino, Calif. – Improved, wearable, noninvasive pediatric blood pressure monitor
  • Sibel Health, Chicago – Hospital-to-home monitoring for pediatric heart conditions

The competition is presented by the Alliance for Pediatric Device Innovation (APDI), a nonprofit consortium led by Children’s National Hospital and funded through the Food and Drug Administration (FDA), and Additional Ventures, a nonprofit focused on accelerating research progress and improving clinical care for individuals born with single ventricle heart defects. Along with grant funding, awardees gain access to support services and technical expertise provided by APDI and Additional Ventures in areas that include engineering, regulatory, reimbursement, clinical trials study design and data science services.

According to the Centers for Disease Control and Prevention, about 40,000 children are born annually with a congenital heart defect. Children with heart conditions need medical devices tailored to their specific physiological needs. There is a significant unmet need for pediatric devices designed to monitor and treat young patients effectively in cardiology, interventional cardiology, cardiac surgery and electrophysiology. This competitive grant program is designed to identify and support the development and commercialization of devices addressing these needs.

“Congratulations to our awardees, whose innovative technologies show great promise in advancing care for pediatric heart patients,” said Kolaleh Eskandanian, Ph.D., M.B.A., vice president and chief innovation officer at Children’s National and APDI program director and principal investigator. “We are thrilled to welcome this new cohort into our pediatric device accelerator, where they will have the opportunity to collaborate with clinician-scientists at Children’s National and connect to Additional Ventures’ network. Along with these collaborations, the awardees will benefit from a full range of APDI wraparound services designed to support the development of devices specifically for pediatric patients, helping them navigate the complex path to market.”

The competition was held in conjunction with the 12th Annual Symposium on Pediatric Device Innovation, presented by Children’s National and co-located with The MedTech Conference powered by AdvaMed.  Focused on transforming pediatric care with exclusive innovations for children, this year’s symposium featured panel discussions and keynote presentations with leading experts in pediatrics and medical technology to exchange information and ideas on critical issues in pediatric device development and pediatric healthcare innovation gaps.

“Additional Ventures is thrilled to support this new class of innovators whose products will make a profound impact in the management and care of pediatric heart patients,” said Additional Ventures CEO Kristie Keller, Ph.D. “We welcome them to our growing community of inventors, researchers and clinicians, and we look forward to working together with our awarded teams and ADPI to bring these products to market. We hope that this competition both inspires and activates the community and brings much-needed new entrants and new ideas to pediatric-first device development.”

APDI is one of five nonprofit consortia in the FDA’s Pediatric Device Consortia grant program. It receives funding to provide a platform of services, expertise and grants that support pediatric innovators in bringing medical devices to the market that specifically address the unmet needs of children. Led by Children’s National, APDI partners include Johns Hopkins University, CIMIT at Mass General Brigham, Tufts Medical Center, MedStar Health Research Institute, MedTech Color and OrthoPediatrics Corp.

Title slide from Dr. Hershenson's webinar

CME Webinar: Pre-participation Cardiac Screening of Teenage Athletes: Goals, Challenges and Pitfalls

In this webinar, Jared Hershenson, M.D., pediatric cardiologist and medical director of Cardiac Exercise and Rehabilitation at Children’s National Hospital, discussed the importance, methods, challenges and recommendations of pre-participation cardiac screening, as well as secondary prevention and eligibility recommendations for athletes with known congenital heart disease.

Key takeaways

  • Importance of cardiac screening: Although sudden cardiac death in young athletes is rare, its impact is devastating, and screening aims to prevent such occurrences.
  • Causes of sudden cardiac death: Key causes include arrhythmia syndromes, cardiomyopathies, congenital coronary abnormalities and other undiagnosed congenital heart diseases.
  • Screening methods: Screening involves history and physical exams, with forms based on AHA and AAP guidelines, and may include ECGs and other tests, although these methods have limitations.
  • Challenges in screening: The sensitivity and specificity of pre-participation exams are low, and there is a lack of uniformity in how screenings are conducted, leading to potential false positives and negatives.
  • Debate on ECG screening: While ECG screening can improve sensitivity and specificity, it also has issues like false positives, which can lead to unnecessary anxiety and additional testing.
  • Secondary prevention: Secondary prevention focuses on having emergency action plans and AEDs in schools to manage sudden cardiac arrest effectively, reducing the risk of death and complications.
  • Eligibility recommendations: Guidelines for athletes with congenital heart disease emphasize individualized assessments to determine safe participation in sports, but there is a need to shift the focus to promoting physical activity rather than restricting given the long-term benefits of exercise and the low risk of sudden cardiac events.
  • Shared decision making: Shared decision making involves discussing the benefits and risks of sports participation with patients and their families, ensuring informed decisions about participation in physical activities.

More information

  • For more information on this webinar, as well as access to the presentation slide deck, visit our website.
  • To register for future CME opportunities or view past presentations, visit childrensnational.org/Webinars.
photograph of a heart and stethoscope

Study offers quality of life insights for adults with congenital heart disease

photograph of a heart and stethoscope

This research, published today in JAMA Network Open, marks a significant step forward in making better information available for the 1.5 million adults in the United States who were born with CHD.

For the first time, adults living with congenital heart disease (CHD) now have valuable insights into their long-term quality of life through data from the Congenital Heart Initiative (CHI). CHI is the nation’s first and largest patient-focused registry for adults with CHD and released its first study involving over 4,500 participants from all 50 states.

This research, published today in JAMA Network Open, marks a significant step forward in making better information available for the 1.5 million adults in the United States who were born with CHD.

“Studies like this that leverage actual patient voices and experiences help us get a better sense of how to advise, support and treat people with CHD as they age,” says Anitha John, M.D., Ph.D., director of the Washington Adult Congenital Heart program at Children’s National Hospital and senior author of the study. “Also, researchers get a clearer picture of the questions that need to be answered to make sure they have the best quality of life possible.”

The study also demonstrates two of the most successful models of current promising trends in clinical research:

  • The power of patient engagement throughout the research process, including design and implementation.
  • The impact of team science, highlighting the benefits of partnerships between patients, researchers and clinicians.

Key highlights include:

  • Many participants (88%) reported having one or more additional health issues (comorbidities).
    • 33% had arrhythmias (irregular heartbeat).
    • 35% had mood disorders, including depression or anxiety.
  • Quality of life is good or better for 84% of people who completed quality of life reporting measures, regardless of the type of congenital heart condition.
  • People with more complex congenital conditions were less likely to meet physical activity recommendations — an important finding with immediate impact.

Treatments for children born with congenital heart disease have improved so significantly in the last two decades that life expectancy continues to increase as well.

“There are now more adults living with congenital heart disease than there are children with CHD,” says Scott Leezer, patient co-principal investigator for the Congenital Heart Initiative registry and co-author of the study. “However, a significant gap remains in what we know about the adult CHD population. As an adult CHD patient, I was excited to contribute to creating this registry, bringing more answers to people like me who want to know how our unique hearts impact our bodies and quality of life over time.”

The authors note that the study’s findings and the registry data currently have a few limitations. First, the registry only contains patient-reported outcomes and no clinical data. The first sub-study of the CHI, the CHI-RON study, addresses this challenge by incorporating additional data sources for a subset of consenting CHI participants.

Additionally, recall bias, underlying neurocognitive challenges and survey fatigue, may have limited participation in the CHI to a smaller subset of adults with CHD. Efforts are underway to develop methods for people with congenital heart disease who have neurodevelopmental deficits or other disabilities to engage in the registry.  The CHI is temporarily closed to new registrants as the study team redesigns the study to better align with the needs of the community.

“We are grateful for everyone who joined this registry, answered survey questions and shared their experiences,” says Thomas Carton, Ph.D., chief data officer at Louisiana Public Health Institute and study co-author. “The CHI registry is a big step forward for adults with CHD, but also can serve as a model for how to bring together physicians, researchers and patients as active participants in care, research and advocacy.”

As the registry grows in the future, it will focus on increasing diversity of participants, developing additional partnerships with other organizations, continued innovation in data usage and improved community engagement, all with the goal of guiding future research that will ultimately improve quality of life for all adults with CHD.

Illustration of VAD and heart

Ventricular Assist Device (VAD) successfully used as bridge to congenital heart surgery

Illustration of VAD and heart

The team supported R’s heart using a VAD and an innovative implantation technique to increase the likelihood he would tolerate the device well.

A case study published in the Journal of Thoracic and Cardiovascular Surgery Techniques demonstrates a proof of concept that temporary use of a VAD to support a single ventricle heart may give that heart time to grow stronger and allow for corrective and lifesaving procedures under cardiopulmonary bypass instead of heart transplant.

What it means

The cardiac surgery team at Children’s National Hospital was able to offer a young boy’s family a lifesaving surgical option, after they were told elsewhere that their only choice was palliative care.

Baby R was born with a series of complex congenital heart conditions: Heterotaxy syndrome, unbalanced atrioventricular septal defect (AVSD), severe atrioventricular valve regurgitation, reduced ventricular function and obstructed total anomalous pulmonary venous drainage (TAPVD).

That combination of defects left his family facing an unthinkable statistic — there was an up to 90% possibility that R would die before reaching his first birthday.

A set of early interventions, including an initial attempt at a single ventricular correction called a bi-directional cavo-pulmonary shunt (BCPS) failed. His already weak heart was left even weaker than before. He continued to decline.

“We don’t ever want to say, ‘There is nothing we can do for your child,’” says Yves d’Udekem, M.D., Ph.D., chief of cardiac surgery at Children’s National. “Instead, we make the impossible, possible.”

The team decided to support R’s heart using a ventricular assist device (VAD) and an innovative technique during implantation of the VAD to increase the likelihood that he would tolerate the device well. By relieving some of the heart’s workload, they hoped that complicating functional issues might improve enough to allow surgeons to operate again and fix some of the structural conditions to optimize blood flow.

Children’s National leads the way

There is literature showing VAD used in this way in adults with heart failure, but until now it had never been successfully applied as a bridge to surgical intervention in a child with a single functioning ventricle. These assist devices are typically used only as a bridge to heart transplant in children.

This is the first documented case where ventricular assist device implantation resulted in gradual improvement in ventricular function, atrioventricular valve regurgitation, and pulmonary vascular resistance.

The improvements culminated in a major milestone: After 8 weeks of VAD support, at 6 months old, R was weaned off the device and had a successful BCPS, the first of several surgical procedures to make blood flow in his heart effective enough to sustain his organs.

When he was 14 months old, he returned for a successful second procedure along the established single ventricle pathway.

What’s next

R is nearly 3 years old and thriving at home, not in the CICU, as he waits to undergo the Fontan procedure — the final structural surgery for his single ventricle heart.

The knowledge and skill of Children’s National Heart Center turned this formerly hopeless situation into a brighter prognosis by repurposing existing technology to save a life.

In their case study conclusion, the team writes, “The observed improvement in ventricular function and AV valve regurgitation following VAD implantation in this patient is proof of the concept that patients with a failing single-ventricle circulation can be bridged to recovery by temporary VAD support. This concept may open new avenues of treatment.”

Read the study: Revalidation to single ventricle pathway with single ventricular assist device: Proof of concept

2024-25 US News Badges

Children’s National again ranked among the best in the nation by U.S. News & World Report

2024-25 US News BadgesChildren’s National Hospital in Washington, D.C., was ranked as a top hospital in the nation by the U.S. News & World Report 2024-25 Best Children’s Hospitals annual rankings. This marks the eighth straight year Children’s National has made the Honor Roll list. The Honor Roll is a distinction awarded to only 10 children’s hospitals nationwide.

This year, U.S. News ended ordinal rankings on its Honor Roll. Instead of assigning a numerical rank from 1 to 10, all hospitals on the Honor Roll will be recognized as having attained the highest standards of care in the nation.

In addition, Children’s National tied for #1 pediatric hospital in the Mid-Atlantic region, which includes New York, New Jersey, Delaware, Pennsylvania, the District of Columbia, West Virginia and Virginia. It’s also best in the Mid-Atlantic in Neonatology.

For the fourteenth straight year, Children’s National ranked in 10 specialty services. New this year, U.S. News included behavioral health as a service line in the rankings. Since it’s the first year, there are no ordinal rankings for behavioral health, but the Children’s National program was named one of the top 50 programs in the country.

“In my first year here, I witnessed what makes Children’s National so special — our commitment to collaboration, empowering one another, and charting a bold path forward for pediatric care,” said Michelle Riley-Brown, MHA, FACHE, president and chief executive officer of Children’s National. “I’m proud U.S. News again recognized Children’s National as one of the top in the nation and the highest-ranked pediatric hospital in D.C., Maryland and Virginia. Together, we’ll continue to push the boundaries of care, research and innovation to make a difference for those who matter most — the kids.”

The annual rankings are the most comprehensive source of quality-related information on U.S. pediatric hospitals and recognizes the nation’s top 50 pediatric hospitals based on a scoring system developed by U.S. News.

“For nearly two decades, U.S. News has published Best Children’s Hospitals to empower the parents and caregivers of children with complex medical needs,” said Ben Harder, chief of health analysis and managing editor at U.S. News. “Children’s hospitals appearing on the U.S. News Honor Roll have a track record of delivering unparalleled specialized care.”

The bulk of the score for each specialty service is based on quality and outcomes data. The process includes a survey of relevant specialists across the country, who are asked to list hospitals they believe provide the best care for patients with the most complex conditions.

The Children’s National specialty services that U.S. News ranked in the top 10 nationally are:

The other four specialties ranked among the top 50 are Behavioral Health, Cardiology and Heart Surgery, Pulmonology and Lung Surgery, and Urology.

close up of surgery

Join us at the Congenital Heart Valve Repair Symposium

Photos of pediatric heart valve repairs

Valve repair has emerged as a pivotal aspect of pediatric heart surgery, offering innovative solutions tailored to the unique anatomical and physiological needs of younger patients. The Congenital Heart Valve Repair Symposium, hosted by the Children’s National Heart Center, aims to deepen the understanding of surgical and diagnostic techniques associated with pediatric heart valve repairs. The Symposium will take place on Saturday, October 19, 2024, in Washington, D.C.

About the symposium

This symposium is designed for a multidisciplinary audience, welcoming not only cardiac surgeons but also echocardiographers, cardiologists, nurses, physician assistants and other team members involved in pediatric heart valve repair. By fostering collaboration among various specialists, we can enhance the care provided to our patients. Importantly, attendees will have the opportunity to earn Continuing Medical Education (CME) credits, ensuring that participation contributes to both personal and professional development.

Session information

The symposium will focus on the latest surgical and diagnostic techniques in heart valve repair, structured around six interactive sessions featuring expert speakers and engaging discussions. Each session will utilize individual video case presentations, allowing participants to visualize and understand the complexities of pediatric valve repair.

Key topics will include:

  • Balancing aortic valve repair and the Ross procedure: An exploration of the indications, techniques and outcomes.
  • Late atrioventricular (AV) valve reoperation: Insights into the challenges and strategies for successful reoperation.
  • Mitral valve repair: Discussing contemporary approaches and the latest advancements in technique.
  • MRI techniques in valve assessment: Understanding the role of advanced imaging in diagnosis and planning.

Register now

Don’t miss the opportunity to gain valuable insights from leading experts in the field of pediatric heart valve repair. The Congenital Heart Valve Repair Symposium promises to be an enriching experience that enhances your clinical practice and improves patient outcomes. We look forward to connecting with you and advancing our shared commitment to excellence in pediatric cardiac care.

Visit our website for registration details and further information.

Visitors from the UAE at Children's National Hospital.

New philanthropic support from the United Arab Emirates furthers research breakthroughs and care

Visitors from the UAE at Children's National Hospital.

His Highness Sheikh Mohamed bin Zayed Al Nahyan, President of the United Arab Emirates (right) visited Children’s National in September 2024.

Continuing a 30-year partnership that has yielded 82 U.S. patents and countless medical breakthroughs for kids and their families, the Government of the United Arab Emirates (UAE) has strengthened its transformational commitment to Children’s National Hospital with a new $35 million donation focused on prenatal, neonatal and maternal health.

The announcement of the new gift comes after a recent visit to the hospital by His Highness Sheikh Mohamed bin Zayed Al Nahyan, President of the United Arab Emirates (UAE), who met with Emirati families and patients receiving care at Children’s National Hospital.

The investment is the latest chapter of a longstanding philanthropic partnership between the UAE and Children’s National. Each year, more than 100 Emirati families travel to Children’s National for advanced pediatric care and life-saving treatments.

This latest investment will bolster various strategic health initiatives, including within the hospital’s Center for Prenatal, Neonatal & Maternal Health Research and the Zickler Family Prenatal Pediatrics Institute.

Researchers in the Center for Prenatal, Neonatal & Maternal Health Research are focused on the role of perinatal factors — including maternal stress, anxiety and depression — on the developing brain of the child. Studies also are revealing the impact of congenital anomalies such as heart disease and acquired conditions such as maternal infection with COVID-19 or Zika virus. New approaches to prenatal and postnatal care promise to optimize long-term outcomes of many hospitalized babies.

“Children in the Washington, D.C., area and across the world benefit greatly from the breakthroughs that have emerged from the incredible decades-long partnership between the UAE and Children’s National,” said Michelle Riley-Brown, President and CEO of Children’s National. “I am deeply grateful for the UAE’s most recent gift. The contribution will positively impact children and families and support the teams of researchers and specialists who dedicate their lives to developing innovative medical care.”

Key milestones

The UAE helped to establish the Sheikh Zayed Institute for Pediatric Surgical Innovation at Children’s National in 2009. Today, the Sheikh Zayed Institute (SZI) has grown into a world-class, self-sustaining research center receiving more than 80% of its funding from grants and outside sources.

This platform for invention is advancing autonomous, robotic surgery. The institute’s researchers believe pediatric surgical outcomes will improve if the precision and delicacy of a robot are incorporated into procedures such as gallbladder removal. SZI is also propelling the use of artificial intelligence to improve pediatric medicine and expand health equity. One example is a deep learning algorithm that uses hand-held ultrasounds to detect early signs of rheumatic heart disease, which kills nearly 400,000 people worldwide each year.

“The lives and health of countless children and families in the Washington area, in the UAE and around the world have been transformed by our partnership,” said Yousef Al Otaiba, the UAE Ambassador to the United States. “Our continued support promises even more breakthrough innovations in pediatric medicine.”

The UAE also supported the opening of the Children’s National Research & Innovation Campus through a 2019 commitment. The campus represents the first pediatric innovation hub of its kind, where scientists, inventors, caregivers, patients’ families and health authorities come together to advance pediatric health.

The Children’s National Rare Disease Institute and Center for Genetic Medicine Research are two of the teams housed at the campus. Together, they are pioneering care for children in the Washington region and abroad as an international referral site for rare disorders. Two examples of their research endeavors include: next-generation genomic testing to better understand how differences in genetic material can affect human health and identifying biochemical analytes.

The UAE opened a medical office in Washington, D.C., in 1991. Since then, thousands of Emirati patients have visited Children’s National for life-changing care for conditions such as congenital heart disease, neurological disorders and cancer. The hospital is currently treating 40 Emirati patients.

“Having our child treated at Children’s National means accessing specialized pediatric care from a renowned institution dedicated to children’s health,” said Hamad Alnuaimi, an Emirati father of a Children’s National patient. “It provides us with confidence and reassurance that our son is receiving the best possible medical attention from experts who understand and prioritize the unique needs of children. For the UAE to have a strong relationship with Children’s National signifies a valuable connection that enhances pediatric healthcare in our country. This partnership allows us to benefit from advanced treatments, medical innovations, and expertise that might otherwise be inaccessible. It represents a commitment to improving the health and well-being of children through international collaboration.”

Audience members at the NIAID Conference

Breaking free of illness: Experts explore solutions for chronic pediatric disorders

  • NIAID Conference Attendees
  • Audience members at the NIAID Conference
  • NIAID Conference Attendees
  • A presentation at the NIAID Conference
  • A presentation at the NIAID Conference
  • A presentation at the NIAID Conference
  • Audience members at the NIAID Conference
  • A presentation at the NIAID Conference
  • Audience members at the NIAID Conference
  • A presentation at the NIAID Conference
  • Audience members at the NIAID Conference
  • A presentation at the NIAID Conference
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When new patients with chronic illnesses come to Roberta DeBiasi, M.D., M.S., division chief of Infectious Diseases, they are often drained of energy, far behind in school and fatigued by the lack of coordinated care among multiple specialists. She envisions a better way to care for these children: a data-driven, multidisciplinary clinic that can help diagnose and treat disorders facing chronically ill children.

In a keynote address, Dr. DeBiasi laid out her vision for improving care during the 7th annual symposium hosted by Children’s National Hospital and the National Institute of Allergy and Infectious Diseases (NIAID): “A new paradigm: Infection-associated chronic illnesses (IACI) affecting children.” Experts from across the country came together to discuss these IACIs, the importance of finding biomarkers to diagnose and monitor them, data-driven therapeutics to treat them, and the urgent need for protocols to guide physicians.

The patient benefit

A range of IACIs – including long COVID, Lyme disease, postural orthostatic tachycardia syndrome (POTS), dysautonomia and more – are stealing normal, active lifestyles from children. Dr. DeBiasi said patients need researchers who understand disease pathogenesis and have standardized disease classification to diagnose and treat these disorders. Because of the complexity of these cases, care delivery and coordination also need to change. Patients, she said, would best be served by beginning with a three-hour appointment in a multidisciplinary clinic with experts from behavioral health, rehabilitative medicine and other specialties.

“When one of these patients comes to us, we feel helpless as physicians,” Dr. DeBiasi said. “There’s no diagnostic, and we don’t know how to treat them…. It is, to me, very energizing that we’re going to be able to have a coordinated way to help these families. But to do that, we have to have standardized disease classification.”

Moving the field forward

In 2017, NIAID and Children’s National launched a clinical research partnership devoted to advancing the health of children with allergic, immunologic, auto-inflammatory and infectious diseases through collaborative research and education. The partnership — co-led by H. Clifford Lane, M.D., NIAID’s deputy director for Clinical Research and Special Projects, and Catherine Bollard, M.D., M.B.Ch.B., director of the Center for Cancer and Immunology Research at Children’s National — promotes the prevention, diagnosis, treatment and cure of these childhood diseases. Every year, the partnership organizes and funds a symposium to explore cutting-edge research and pressing issues in pediatric care.

At this year’s gathering, experts examined the specifics of various disorders, including Alexandra Yonts, M.D. She provided new data from the Children’s National Post-Covid Program and explained that patients “are clamoring” for help with symptom management.

“There have been virtually no randomized, controlled trials and very little evidence on any sort of aggressive treatments, or pharmaceutical management options, especially in the pediatric population,” Dr. Yonts said. “Upon recent attendance at some long COVID meetings, there is an expressed concern, especially among pediatric providers, about trying medications off-label in these long COVID patients.”

Miss the symposium? You can learn more about the science they explored in the symposium’s recording on topics including:

  • Potential overarching mechanisms of disease, including pathogen- and host-mediated factors.
  • Identifying potential biomarkers for chronic illnesses
  • Treatments and multidisciplinary approaches for patients with IACIs
  • Patient advocacy
AAP 2024 Conference logo

Children’s National Hospital the 2024 American Academy of Pediatrics meeting

Children’s National Hospital-affiliated participants will attend this year’s American Academy of Pediatrics National Conference and Exhibition. The meeting will take place in Orlando, Florida from September 27 to October 1. You will find a mini schedule of sessions below.

Date Time Presenter Title
9/27/2024 8:00:00 AM Briony Varda, M.D. H1016: Section on Surgery Program: Day 1
9/27/2024 8:00:00 AM Briony Varda, M.D. H1017: Section on Urology Program: Day 1
9/27/2024 8:00:00 AM Lowell Frank, M.D., FAAP H1014: Section on Cardiology and Cardiac Surgery Program: Day 1
Through the Looking Glass: Using Past Decisions to Inform Current and Future Clinical and Professional Practice
9/27/2024 2:30:00 PM Brian K. Reilly, M.D., FAAP S1208: Sounding the Alarm on Noise: Prevention Is Key
9/27/2024 4:00:00 PM Brandon Kappy, M.D., MPP S1312: Using Lessons From the East Palestine Train Derailment to Prepare for Environmental Disasters
9/28/2024 8:00:00 AM Alicia M. Tucker, M.D. H2013: Section on Obesity Program
9/28/2024 8:00:00 AM Annie L. Andrews, M.D., MSCR H2011: Section on Emergency Medicine Program: Day 2
EmergiQuiz, State of the Section & SOEM Awards Presentations and 2024 PEMPix & Hot Topics in Pediatric Emergency Medicine
9/28/2024 12:00:00 PM Monika Goyal, M.D., M.S.C.E.
 Prevalence of Period Poverty in a Pediatric Emergency Department
9/28/2024 3:30:00 PM Allison Markowsky, M.D., MSHS, FAAP S2412: What’s Trending in the Newborn Nursery: Controversies and Evidence
9/28/2024 5:00:00 PM Bernhard L. “Bud” Wiedermann, M.D., M.A., FAAP S2507: Should I Change My Clinical Practice Based on a Hot New Article? Reading Journals With a Critical Eye
9/29/2024 8:30:00 AM Dennis Ren, M.D. H3022: Section on Emergency Medicine Program: Day 3
Inaugural “Babble Royale” Competition & More Hot Topics in PEM; PediSonoFest
9/29/2024 9:00:00 AM Natasha Shur, M.D. S3208: Genetic Testing Boot Camp
9/29/2024 1:00:00 PM Lamia Soghier, M.D., M.Ed., M.B.A., FAAP H3037: Section on International Medical Graduates Program
Opportunities and Paths for Career Development in Academic Pediatrics
9/29/2024 4:00:00 PM Margaret Rush, M.D., MSHS I3304: Emergencies in the Technology-Dependent Medically Complex Children: What Every Pediatrician Should Know
9/29/2024 5:00:00 PM Anjna Melwani, M.D. S3501: Emergencies in the Technology-Dependent Medically Complex Children: What Every Pediatrician Should Know
9/30/2024 2:00:00 PM Rana F. Hamdy, M.D., M.P.H., MSCE S4302: Diagnosis and Treatment of Community-Acquired Pneumonia
10/1/2024 9:00:00 AM Nathaniel S. Beers, M.D., M.P.A., FAAP S5207: Eliminating Suspension, Expulsion, and Other Harsh Discipline Practices in Schools and Early Education

 

Team performing cardiac surgery at Children's National

Long-term outcomes are key measure of CHD care quality and safety

Short-term outcomes data may be one benchmark of the quality and safety found in a pediatric cardiac surgery program, but according to the team at Children’s National Hospital, it shouldn’t be the sole factor in how referring physicians and families make decisions about where to seek care.

Instead, physicians and families need more information about what to expect for a child’s entire lifespan. To meet this need, the Division of Cardiac Surgery at Children’s National has launched the Children’s National Cardiac Outcomes Registry (CNCOR), a first-of-its-kind database that captures outcomes from 15-plus years of congenital heart surgical repairs for specific congenital heart conditions.

What it means

Today, most pediatric heart programs publicly share their outcomes based on benchmarks defined by the Society for Thoracic Surgeons (STS). For cardiac surgery, the data points are focused on the short-term outcomes for various procedures, ranging from 30 days to one year after surgery.

However, as surgical procedures have been refined and multi-disciplinary teams continually improve their knowledge of how to treat children with these congenital heart defects, more children with these conditions are living far beyond those time frames. One metric, operative mortality for “index cases” defined by the STS (excluding VAD and ECMO), measures how many children having heart surgery with the cardiopulmonary bypass die during surgery or within the 30 days after surgery.

Recently at Children’s National, the Cardiac Surgery, Cardiac Intensive Care Unit, Cardiology and Cardiac Anesthesia teams had a remarkable year with zero operative mortality, or no deaths, for the types of cases included in this benchmark. While it’s impossible to expect zero mortality to continue indefinitely when caring for children with the most severe and complex heart conditions — as is the case at Children’s National — the national average operative mortality for these procedures is closer to 3%.

Yves d’Udekem, M.D., Ph.D., chief of Cardiac Surgery at Children’s National, says that this achievement is not one he expected to “ever see in his lifetime” and is a testament to the teams’ dedication to providing the highest quality care every day. However, he also noted, “Achieving such impressive statistics for short-term measures has never been, is not, and will never be my objective. We also need to look beyond it. What happens to this patient 5, 10 or 15 years down the line? That’s what we want to know.”

Children’s National leads the way

The CNCOR collects long-term data from 20 years of cardiac surgical procedures at Children’s National. This data has allowed Children’s National to create a series of charts that show predicted long-term outcomes for specific congenital heart conditions.

The charts are now available in a new Cardiac Surgery Long-Term Outcomes section on the website, organized by specific types of congenital heart disease, including:

  • Tetralogy of Fallot
  • Aortic arch coarctation
  • Atrioventricular septal defects
  • Transposition of the great arteries

For most conditions, data is available showing long-term mortality as well as re-operation or re-intervention rates for children who underwent these procedures at Children’s National, going as far back as the year 2000. Eventually, the database might expand to include indicators such as exercise capacity and neurological outcomes.

What’s next

The launch of the CNCOR is the start of efforts by the team at Children’s National to provide what Dr. d’Udekem calls “proper” benchmarking based on the whole life of a patient rather than a single event in time.

If more institutions collect and report this data and make it available, patients, families and practitioners who refer to cardiac surgery will have a true lifetime perspective of what a surgical procedure at a specific institution may mean for a child.

Wayne Franklin, M.D., F.A.C.C.

Optimized congenital heart care ‘from twinkle to wrinkle’: Q&A with Wayne Franklin

Wayne J. Franklin, M.D., F.A.C.C., recently joined Children’s National Hospital as senior vice president of the Children’s National Heart Center. In that role, he oversees the full spectrum of heart care services which includes comprehensive care, as he puts it, from twinkle — when a child is barely more than a twinkle in their mother’s eye — to wrinkles — or throughout the lifespan.

During his first week, Dr. Franklin answered questions about his vision for the Children’s National Heart Center and told the team more about his clinical and research priorities.

Q: Why did you choose Children’s National?

A: Children’s National has such a long history of caring for the children and families in the community — over 150 years. This is a hospital taking fantastic care of patients now, but also planning for the future and the future of healthcare specifically. And I wanted to be part of that team. We know health care is ever changing and I want to be ahead of that, really providing the best care possible for today’s patients and about how to plan the ideal care for tomorrow’s patients.

I’m also excited to work with Children’s National President and CEO Michelle Riley-Brown. When I worked with her previously, I found out she’s a fantastic leader. I know she’s already started to do amazing things for Children’s National and the community.

Q: What is your vision for Children’s National Heart Center?

A: My vision for the heart center is to organize, coordinate and optimize all the different aspects of caring for children with heart problems.

It’s a complicated process. There’s intensive care in the hospital, ambulatory care in the clinic, acute care and emergency care. One of my roles is to coalesce all of those facets to provide total care for people from the prenatal period through birth and beyond into the teenage years, adulthood and even parenthood and grandparenthood.

I think we’re well-equipped to do that here at Children’s National.

As part of our commitment to providing the best care for patients and their families, we also plan to rely on our patient-family advisory council and our family-centered care approach. We take patient and family concerns to heart and want to continue bringing that information together with our world-class clinical care. That’s how we’ll be sure to provide great outcomes now and down the road.

Q: How is research a part of your vision for the Heart Center?

A: Research is critical to cardiac disease in children, especially in Washington, D.C. I think we’re very fortunate because people here at Children’s National are doing groundbreaking research and we work close to truly great scientific organizations like the George Washington University and the National Institutes of Health. Some of our heart center faculty actually work at the NIH too.

The top centers in the country, including Children’s National, are involved with cutting-edge innovation and research alongside clinical care and a big part of my job is to support these efforts to translate this science and help improve health outcomes for our patients.

Q: Why did you choose to work in the field of pediatric cardiology?  

A: While children with heart problems can become very sick, our advances in cardiac surgery, catheter interventions, cardiac intensive care and anesthesia allow us to work together to make them better reasonably quickly. To be able to provide them that care is really rewarding. Our team can really impact their health for a lifetime.

Q: What research are you, personally, interested in?

A: The research that I’m particularly interested in involves the full gamut of cardiac disease, from single ventricle physiology to pulmonary hypertension to fetal cardiology to women with heart disease. Fortunately, here at Children’s National there is a strong research infrastructure and some fantastic physician scientists.

Q: How did your interest in pediatric cardiology evolve into a specialty in adult congenital heart disease?  

A: When these kids grow up, they become adults with heart disease that is caused by their congenital heart lesions. It’s a different type of heart disease than an age-related heart attack, high cholesterol or stroke. I focused on this area many years ago because there are now more adults with congenital heart disease than children.

Currently, there is a need for more adult congenital heart disease specialists and there will continue to be need for even more in the future. I’m fortunate to join one of the best adult congenital heart programs in the country by coming to Children’s National.

Q: How do you spend your free time when you aren’t here at the hospital?

A: I work a lot but when I get time away from work, I love to spend my it with my family and I’m lucky to have a truly spectacular wife. In December, we’ll celebrate our 20th wedding anniversary and it’s been an extraordinary and exciting ride. We have two wonderful kids, both teenagers. Being a father myself has given me a different perspective about taking care of children throughout their lifetimes.

Q: What’s your favorite Washington, D.C., monument?

A: I always have to go back to the Lincoln Memorial. It was the first monument I saw on an 8th grade trip. I still remember the moment when I first walked up there…you see him. Incredible. He is literally larger than life, it’s just breathtaking. I think I’ll always remember that feeling.

Dr. Craig Sable in Uganda

Around the world

Our Global Health Initiative launched in 2016 with the goal of eliminating pediatric health disparities around the world. We aim to address the most pressing pediatric health issues through better care for medically underserved populations. This leadership helps us achieve our mission of caring for all children. A broad range of education and research projects improves health outcomes. They also offer enriching opportunities for experienced faculty and emerging leaders to advance clinical excellence.

Healing hearts in Uganda

Dr. Craig Sable in Uganda

Dr. Craig Sable and team train partners in Uganda.

Craig Sable, M.D., interim chief of Cardiology, improves care for young people with rheumatic heart disease (RHD) in Uganda. Donors, including the Karp Family Foundation, Huron Philanthropies, Zachary Blumenfeld Fund and the Wood family, make this possible. RHD affects 50 million people, mostly children, worldwide. It claims 400,000 lives each year.

Dr. Sable and Ugandan partners completed important research showing that early RHD detection, coupled with monthly penicillin treatment, can protect the heart. They are working on practical solutions, such as a new portable device with artificial intelligence (AI) that can easily screen for RHD.

In 2023, Dr. Sable led two missions in Uganda where he and his team did surgeries and special tests for 18 children with RHD. They also taught local doctors new skills to help more kids on their own.

Plastic surgery and reconstructive care in Kenya and Nepal

Each year our Craniofacial & Pediatric Plastic Surgery team, under the leadership of Johnston Family Professor of Pediatric Plastic Surgery and Chief of Pediatric Plastic Surgery Gary Rogers, M.D., J.D., LL.M., M.B.A., M.P.H., provides opportunities for fellows to participate in surgical missions.

In 2024, Perry Bradford, M.D., traveled to the Moi Teaching Hospital in Eldoret, Kenya where she provided patients with burn, pressure wound and cleft reconstruction. She built community connections with the local plastic surgeons and educated registrars and medical students. “This gave me firsthand experience working in a community with limited resources and forced me to be more creative,” Dr. Bradford says. “The experience inspired me to examine what it means to have consistent access to advanced tools and equipment.”

In 2022, a group traveled to Nepal to provide care. Some patients arrived after days of travel by yak or buffalo. One child with a burn injury recovered use of her hand. The team educated local providers to deliver life-changing treatments unavailable in Nepal.

Dr. Tesfaye Zelleke in Ethiopia

Dr. Tesfaye Zelleke, left, and team in Ethopia.

Elevating epilepsy care in Ethiopia

Neurologist Tesfaye Zelleke, M.D., and partners in Ethiopia are seeking to improve the lives of children with epilepsy. The BAND Foundation provides support. Ethiopia has a population of about 120 million yet only a handful of pediatric neurologists.

Dr. Zelleke’s team trained nonspecialist providers to diagnose and treat children in the primary care setting. They also launched a mobile epilepsy clinic to provide community care and build the capacity of local clinicians. In collaboration with advocacy groups, the team educates the public about epilepsy with a goal of reducing stigma.

New hope in Norway

In 2023, our Division of Colorectal & Pelvic Reconstruction shared its expertise with clinicians at Oslo University Hospital, Rikshospitalet, in Norway. This effort was a key first step in Oslo becoming the first dedicated colorectal center in Scandinavia.

Marc Levitt, M.D., and team members performed complex surgeries otherwise unavailable for waiting patients. They led an academic conference. They held clinics to educate nurses, reviewed patient records and made care recommendations. Specialized care enabled a young patient with significant bowel difficulties to recover function and lead a normal life.

The team will travel to South Africa, the Czech Republic and Spain in 2024. Donors, including The Dune Road Foundation and Deanna and Howard Bayless, make this work possible.

Improving outcomes for babies in the Congo

AI can be a valuable tool for diagnosing genetic conditions. It detects unique facial patterns that clinicians without genetics training can miss. However, existing facial analysis software struggles in nonwhite populations.

A team led by Marius George Linguraru, D.Phil., M.A., M.Sc., the Connor Family Professor of Research and Innovation and principal investigator in the Sheikh Zayed Institute for Pediatric Surgical Innovation, is working to improve the newborn diagnosis rate worldwide. They are testing smartphone software in the Democratic Republic of Congo. Diverse newborn data improves AI’s ability to detect a variety of genetic conditions in more children. Early detection, diagnosis and informed care lead to better health outcomes.

Nephrology care for kids in Jamaica

Dr. Moxey-Mims and team in Jamaica

Jennifer Carver and Dr. Marva Moxey-Mims, center, with staff at Bustamante Children’s Hospital.

Marva Moxey-Mims, M.D.,, chief of Nephrology, is bringing care to children with kidney disease in Jamaica, with a goal of improving health equity. An International Pediatric Nephrology Association grant helped make it possible.

On a recent trip, Dr. Moxey-Mims and a small team — including Jennifer Carver, RN, CNN, lead peritoneal dialysis nurse at Children’s National, and three pediatric nephrologists from Jamaica — trained nearly 30 nurses from Jamaican hospitals. Nurses received hands-on dialysis education to improve their clinical skills. The team also worked to educate the community in disease awareness and prevention.

Read more stories like this one in the latest issue of Believe magazine.

Dr. Anitha John addresses symposium attendees

Addressing long-term brain effects of congenital heart disease

Dr. Anitha John addresses symposium attendees

Dr. Anitha John, medical director of the Washington Adult Congenital Heart Program at Children’s National Hospital, presenting on the lifelong effects of congenital heart disease on brain health at a recent symposium.

About 81% of the 40,000 babies born in the United States with congenital heart disease (CHD) are expected to survive to at least age 35, according to the Centers for Disease Control and Prevention. As survival rates have increased in recent decades, clinicians treating CHD patients are seeking to improve outcomes by understanding the long-term health effects and complications that arise for them.

Anitha John, M.D., Ph.D., medical director of the Washington Adult Congenital Heart Program at Children’s National Hospital, presented an overview of what researchers currently know about the lifelong effects of CHD on brain health at a symposium focused on the heart-brain continuum presented by Children’s National Innovation Ventures, CobiCure and JLABS @ Washington, D.C. She also discussed critically needed advancements in monitoring technology to help clinicians better understand and address how CHD affects the brain.

Why it matters

Based on data collected from adults and children with the condition, Dr. John shared that people with CHD face many potential lifelong challenges and risks, which vary based on disease severity:

  • About one-third report a mood disorder, either anxiety or depression
  • 25% higher risk of substandard academic outcomes
  • 50% more likely to require special education services
  • Higher incidence of motor skills impairment
  • Higher lifetime prevalence of ADHD
  • Generally lower educational attainment at adulthood
  • Higher risk of autism spectrum disorders
  • Higher rate of dementia before the age of 65

Why do some people with CHD experience profound, lifelong brain effects? Dr. John notes that clinicians and researchers are seeking those answers, recognizing that they likely involve various factors and accumulating issues that occur over the entire lifespan, from fetal life onward.

Because the heart supplies the brain with oxygen through circulated blood, the diagnostic tool clinicians most want for patients of all ages is a technology that enables noninvasive monitoring of central venous pressure, an indicator of the volume of blood returning to the heart and the pressure within the heart. Currently, the most reliable way to measure this pressure is by an invasive procedure in which a catheter is inserted into the patient’s subclavian or internal jugular vein or by placing a device into the patient’s pulmonary artery. These procedures have limitations and cannot be used for routine surveillance.

What’s next

Dr. John says noninvasive central venous pressure monitoring is important to understanding and addressing what is causing brain injury in CHD patients. She says the challenges in developing this monitoring solution include the need for an individualized approach, a design that accommodates multidisciplinary use, sizing for patients from infants to adulthood, usability for all age groups and avoiding stigma for wearers.

To address this need, the Alliance for Pediatric Device Development – a consortium funded by the Food and Drug Administration and led by Children’s National – is partnering with CobiCure to issue a request for proposals for direct device funding. The goal is to provide funding to innovators who offer solutions to the dire unmet need for pediatric devices that provide noninvasive monitoring of the circulatory system and heart performance. Details will be announced in June 2024.

 

two puzzle pieces, one with a heart and one with a brain

$2.1m award will fund studies for adults with CHD and neurodevelopmental disorders

two puzzle pieces, one with a heart and one with a brain

The project will study the best engagement methods on how to include adults who have both congenital heart disease and neurodevelopmental disorders in the Congenital Heart Initiative (CHI), the first global, patient-powered registry for adults with congenital heart disease.

A first-of-its-kind study focused on including adults with congenital heart disease (CHD) and neurodevelopmental disabilities in patient-reported outcome research has been approved for $2.1 million in funding from the Patient-Centered Outcomes Research Institute (PCORI).

The study, Achieving Equity: Inclusion of Adults with Congenital Heart Disease (CHD) Living with Neurodevelopmental Disorders (NDDs) in Patient Centered Outcomes Research, is led by Anitha John, M.D., Ph.D., at Children’s National Hospital, together with partners from a range of academic, scientific and patient advocacy perspectives.

What this means

The project will study the best engagement methods on how to include adults who have both congenital heart disease and neurodevelopmental disorders in the Congenital Heart Initiative (CHI), the first global, patient-powered registry for adults with congenital heart disease. In its current form, individuals with developmental disabilities are often excluded, as they are unable to complete the surveys independently.

Building upon Dr. John’s previous collaborations, the project features a shared leadership model with partners from across the United States.

Leading the study with Dr. John, William Bennett, M.D., (Indiana University) provides expertise in patient engagement research and big data and will serve as dual principal investigator (PI).

The project also utilizes the strengths and long-standing connections with PCORnet®, the National Patient-Centered Clinical Research Network, with Thomas Carton, Ph.D., (Louisiana Public Health Institute/REACHnet) serving as the PCORnet PI, Jamie Jackson, Ph.D., (Nationwide Children’s Hospital/PEDSnet) serving as a scientific PI with psychology expertise, Arwa Saidi, M.B.B.Ch., M.Ed., (University of Florida/OneFlorida) and Emily Ruckdeschel, M.D., (CHOP/PEDSnet) serving as recruiting site PIs.

The Adult Congenital Heart Association (ACHA) continues as part of the leadership team, represented by two parent co-PIs along with the Cardiac Neurodevelopmental Outcomes Collaborative (CNOC), represented by Thomas Miller, D.O., (Maine Medical) and CURA strategies, represented by Scott Leezer.

The study was selected for support through a groundbreaking PCORI funding announcement focused on building an evidence base to support development of measures and approaches that strengthen meaningful engagement in comparative clinical effectiveness research. Much has been learned in recent years about participatory research that seeks to involve the end users of study results, including patients, caregivers, clinicians and others, as partners in the research process. But there has been little systematic study about which engagement techniques are most effective.

Why it matters

Although nearly 2 million adults in the United States are living with a congenital heart defect — more adults than children — it has been historically difficult to gather data on people with these conditions and to identify patient needs, especially in those with neurodevelopmental disabilities. Despite significant investment in cardiac neurodevelopmental programs across North America, CNOC has identified large gaps in current infrastructure to provide a continuum of neurodevelopmental care into adulthood.

Even more challenging is ensuring that the data is representative of the entire population of people living with these conditions. According to a 2024 Scientific Statement from the American Heart Association, “Although not every individual with congenital heart disease will have a developmental delay or disorder, neurodevelopmental deficits rank among the most enduring and impactful complications faced by individuals with complex congenital heart disease.”

Unfortunately, this critical subgroup remains underrepresented even in inclusive efforts such as CHI. Currently to be eligible for the CHI, participants must be able to complete the CHI’s patient-reported outcome tools independently. Individuals with CHD and neurodevelopmental disorders are often ineligible to participate.

The lack of engagement methods to effectively incorporate patients with developmental disabilities presents a major gap in the science of engagement research that hinders a full understanding of the long-term outcomes of all patients with CHD.

What’s next

This work to engage and capture the experiences of the most vulnerable adults with CHD will be an important enhancement to the CHI and will build upon the work of an ongoing sub-study of the CHI that uses PCORnet®, the National Patient-Centered Clinical Research Network, the CHI-RON study (PCORI RD-2020C2-20347).

The award has been approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.

PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions.

illustration of diseased liver

Dominant Fontan approach may be associated with increased liver cirrhosis

illustration of diseased liver

The amount of long-term liver cirrhosis in children with single ventricle congenital heart disease who underwent the Fontan procedure may depend on which surgical approach is chosen by the pediatric cardiac surgeon.

The amount of long-term liver cirrhosis in children with single ventricle congenital heart disease who underwent the Fontan procedure may depend on which surgical approach is chosen by the pediatric cardiac surgeon, according to researchers at Children’s National Hospital who presented their findings this week at the American Association of Thoracic Surgery annual meeting. The full manuscript appears in the Journal of Thoracic and Cardiovascular Surgery.

What this means

Senior study author Yves d’Udekem, M.D., Ph.D., chief of Cardiac Surgery at Children’s National, says that the vast majority of Fontan procedures in the United States use an extracardiac conduit approach to redirect blood flow to the lungs. However, a retrospective review of 332 patients who underwent the Fontan at Children’s National showed that children who received the extracardiac Fontan may experience liver cirrhosis at a rate of 30% after 15 years compared to the lateral tunnel approach which showed 15-year liver cirrhosis at a significantly lower rate of 4.4%. The lateral tunnel was a well-established method pioneered in Europe by pediatric cardiac surgeon Marc de Leval in the 1980s. This technique lost traction in the field and people started in the 1990s to perform a variation of the technique called the extracardiac Fontan because it was thought that it would be giving more favorable flows and protect the patients against rhythm issues. Thirty years later, these predictions did not reveal themselves to be true.

“Since the 1990s, the vast majority of Fontan procedures in the United States are performed creating an extracardiac conduit rather than the lateral tunnel,” says Dr. d’Udekem. “But what we see when we follow long-term outcomes of these children is a consequence not reported before.”

Children’s National leads the way

Dr. d’Udekem and the research team, including presenter and first author Eiri Kisamori, M.D., a cardiac surgery fellow at Children’s National, are the first to report these findings based on reviews of 15-year outcome data. These retrospective reviews of long-term outcomes are a critical tool to inform and improve clinical approaches with the goal of optimizing the long-term quality of life for children born with these critical congenital conditions.

What’s next

While more research is needed, the authors hypothesize that the size of the conduit for blood flow may be the culprit for higher levels of liver damage. For children who have already received an extracardiac Fontan, Dr. d’Udekem says that widening their existing conduit in a reoperation may successfully improve blood flow to the liver. For future procedures, he notes that in his own practice, he now uses the lateral tunnel approach whenever possible.

Read the study: Alarming rate of liver cirrhosis after the small conduit Extracardiac Fontan. A comparative analysis with the Lateral Tunnel.

2024 Pediatric Academic Societies meeting logo

Children’s National Hospital at the 2024 Pediatric Academic Societies meeting

Children’s National Hospital-affiliated participants will present at this year’s Pediatric Academic Societies meeting. The meeting will take place in Toronto, from May 2-6, 2024. For information on the presentations, please refer to the chart below.

Day Time Presenter(s) Title
5/3/2024 9:00 AM Stacey Stokes, M.D., M.P.H. APA QI: Informatics for Improvers: Leveraging Clinical Decision Support to Propel Data-Driven and Reliable Continuous Improvement
5/3/2024 12:00 PM Rana F. Hamdy, M.D., M.P.H., MSCE A Career in Antimicrobial Stewardship… so Much More to Explore
5/3/2024 12:00 PM Ashima Gulati, M.D., Ph.D., FASN Case Studies in Pediatric Kidney Diseases: Who, When and How to Order Genetic Testing?
5/3/2024 3:45 PM Priti Bhansali, M.D., ME.d. iSPOT an Improvement: Taking Peer Observation and Feedback to the Next Level
5/3/2024 3:45 PM Josepheen De Asis-Cruz, M.D., Ph.D. Maternal psychopathology and SSRI use during pregnancy are associated with altered fetal hippocampal connectivity in utero
5/4/2024 8:00 AM Andrea J. Boudreaux, Psy.D., M.P.H., M.H.A., F.A.C.H.E. A Doctor in the School Nurse’s Office? Bringing a Virtual School Based Program into Practice
5/4/2024 8:00 AM Jessica Hippolyte, M.D., M.P.H. A Practical Approach to a Thorny Issue: Evaluating the Role of Race, Ethnicity, and Ancestry in Clinical Decision-Making
5/4/2024 8:00 AM Ashraf S. Harahsheh, M.D., F.A.A.P., F.A.C.C. Cardiology 1
5/4/2024 8:00 AM Dewesh Agrawal, M.D. Emergency Medicine 1: Quality and Safety
5/4/2024 8:00 AM Lenore Jarvis, M.D., ME.d.
Amanda Stewart, M.D., M.P.H.		 From Bedside to State House: Daily Advocacy
5/4/2024 8:00 AM Aisha Barber, M.D., ME.d. Unionization in Pediatrics: A Pro-Con Debate
5/4/2024 8:45 AM Jillian E. Nickerson, M.D., M.S. Implementation of tele-psychiatry in an urban pediatric satellite emergency department
5/4/2024 9:00 AM Jessica Weisz, M.D. “TEACH”ing: Evaluation of a 3-Year Multimodal Child Poverty Curriculum
5/4/2024 9:00 AM Tameka T. Watson, M.D. Timing of Growth Failure in Very Premature Infants and Implications for Brain Development
5/4/2024 10:00 AM Neha H. Shah, M.D., M.P.H. Subspecialty Networking Breakout: Pediatric Hospital Medicine
5/4/2024 11:00 AM Lee S. Beers, M.D. AAP Presidential Plenary: Emerging Research on the Intersections of Mental Health, Impact of the Pandemic, and Equity, Diversity, and Inclusion
5/4/2024 11:00 AM Denver Brown, M.D. Implications of SDOH on glomerular disease, hypertension and CKD
5/4/2024 11:15 AM Josepheen De Asis-Cruz, M.D., Ph.D. Associations Between Antenatal Opioid Exposure and Newborn Functional Brain Connectivity
5/4/2024 2:00 PM Ian Chua, M.D., M.H.P.E. Addressing Misinformation & Building Competency for Gender Diverse Patient Care
5/5/2024 8:00 AM Tamara Gayle, M.D., ME.d., M.P.H. APA SIG: Pediatric Hospital Medicine – Creating an Inclusive and Sustainable Workplace
5/5/2024 8:00 AM Suma B. Hoffman, M.D., M.S.
Simranjeet S. Sran, M.E., ME.d., C.H.S.E., F.A.A.P.		 Hands on Workshop: Complex Resuscitations in Neonates and Infants – Managing High Acuity, Low Occurrence (HALO) Events
5/5/2024 8:15 AM Jaytoya Manget, D.N.P., M.S.P.H., F.N.P. Connecting the Dots to Improve Health and Education Equity: Results of A Pilot Program Integrating School Attendance Data into a Pediatric Primary Care
5/5/2024 8:55 AM Aisha Barber, M.D., ME.d. APA Pediatric Hospital Medicine SIG – Creating an Inclusive and Sustainable Workplace
5/5/2024 11:00 AM Nicola Brodie, M.D.
Julie Heier, Ph.D.
Courtney Horton, M.D.
Darcel Jackson, C.P.X.P., L.S.S.G.B.
Emma Whitmyre, Ph.D.		 Challenge Accepted: Integrating Behavioral Health in Primary Care for Children with Medical Complexity and Their Families
5/5/2024 11:00 AM Ian Chua, M.D., M.H.P.E.
Margarita Ramos, M.D., M.S.
Neha H. Shah, M.D., M.P.H.		 Embracing Failure: The Key To Success In Academic Medicine
5/5/2024 11:00 AM Caleb E. Ward, M.B., B.Chir., M.P.H. Emergency Medicine 4
5/5/2024 11:00 AM Dewesh Agrawal, M.D.
Terry Kind, M.D., M.P.H.		 Launching and Landing a Career in Medical Education: From Passion to Profession
5/5/2024 11:00 AM Nathaniel S. Beers, M.D., M.P.A.
Andrea J. Boudreaux, Psy.D., M.P.H., M.H.A., F.A.C.H.E.
Bianca Johnson, M.S.W.
Jaytoya Manget, D.N.P., M.S.P.H., F.N.P.
Jessica Weisz, M.D.		 School Attendance as a Vital Sign: Integrating school attendance into practice to advance health and educational equity
5/5/2024 11:05 AM Sudeepta Basu, M.D. SPR 2023 Bridging to Success Award: GABA-editing spectroscopy for understanding the developing brain in preterm infants.
5/5/2024 2:00 PM Allison M. Jackson, M.D., M.P.H. Child Protective Services Referrals in the Context of Intimate Partner Violence: Clinical Practice, Research, & Advocacy
5/5/2024 2:00 PM Josepheen De Asis-Cruz, M.D., Ph.D. In utero SSRI exposure alters fetal cerebral cortical development and structural brain connectivity
5/5/2024 2:00 PM Jeremy Kern, M.D.
Lydia Lissanu, M.D.
Elana Neshkes, M.D.
Laura A. Nicholson, M.S.N., R.N., C.P.N., C.H.S.E.
Grace Quinn, M.D.
Ariella M. Weinstock, M.D., M.S. Ed		 STRIVE for a restorative de-escalation: Strategies for a TRauma-Informed approach using Verbal and Environmental Skills
5/5/2024 2:45 PM Kristen Sgambat, Ph.D., RD Arterial stiffness, body composition, and perception of racism in pediatric kidney transplant recipients
5/5/2024 2:45 PM Sudeepta Basu, M.D. Cerebellar GABA and Glutamate Concentrations at Term-equivalent age Predicts 18-month Cognitive Deficits in Preterm Infants
5/6/2024 8:00 AM Ian Chua, M.D., M.H.P.E.
Gabrina Dixon, M.D., ME.d.
Tamara Gayle, M.D., ME.d., M.P.H.
Margarita Ramos, M.D., M.S.		 Amplify Your Voice: Media Strategies Beyond Conventional Academic Dissemination
5/6/2024 8:00 AM Stacey Stokes, M.D., M.P.H.
Padma Swamy, M.D., M.P.H.		 APA SIG: Health Informatics and Serving the Underserved Combined – Moving the Needle on Social Needs: From Screening to Data Management and Response
5/6/2024 8:00 AM Deena Berkowitz, M.D., M.P.H. APA Urgent Care SIG: You’re Not Too Busy To Think About Promotion: Leveraging Your Current Scholarly Activities For Academic Advancement
5/6/2024 8:30 AM Padma Swamy, M.D., M.P.H. Screening, data sharing, and resource allocation considerations when developing social needs interventions
5/6/2024 1:00 PM Christina Lindgren, M.D. APA Simulation-based Medical Education (SBME) SIG
5/6/2024 1:00 PM Gabrina Dixon, M.D., ME.d. Creating and Optimizing a Visiting Elective at your Institution for Underrepresented in Medicine (URiM) Students
5/6/2024 1:00 PM Junghoon Kim, Ph.D. Improved prediction of fetal neurobiological features by censoring high-motion frames in fetal functional MRI
5/6/2024 1:05 PM Christina Lindgren, M.D. Introduction to Conceptual Frameworks for Simulation Based Medical Education
5/6/2024 1:10 PM Suma B. Hoffman, M.D., M.S. Small Group Activity: Name That Conceptual Framework
5/6/2024 2:15 PM Margaret Rush, M.D., M.S.H.S. Racial disparities in hospital length of stay for bacterial tracheostomy associated infections

 

Toronto skyline with AATS logo

Children’s National at the104th Annual AATS Meeting

Attending the American Association for Thoracic Surgery’s 104th Annual Meeting this weekend? Stop by the Children’s National Booth #1315! Here is a look at the topics that our Childrens National Heart Center will be presenting on. We look forward to connecting with you in Toronto.

Name Session & Role Topic Type Date Time Location
Can Yerebakan, M.D. Congenital Scientific Session: Strategies for Management of the Borderline Heart

(Speaker)

 

 Debate: Hybrid is the Default Pathway- Pro Oral Presentation Saturday, April 27, 2024 8:50 a.m. Room 716
Yves d’Udekem, M.D., Ph.D. AATS/CHSS Summit: Hypoplastic Left Heart Syndrome

(Commentator)

 

 Are We Getting better? Ongoing Challenges of Atrioventricular Valve Repair in Single Ventricle Patients with Right Ventricular Morphology Oral Presentation Saturday, April 27, 2024 1:30 – 3:56 p.m. Room 716
Yves d’Udekem, M.D., Ph.D. Congenital Rapid Fire Orals – Theater Session I

(Case Video Presenter)

 Early Pulmonary veins Channeling in a Complex Heterotaxia Heart wit Oral Presentation Sunday, April 28, 2024 9:12 a.m. Theater 1
Eiri Kisamori, M.D. Congenital Rapid Fire Orals

(Presenter)

 Alarming Rate of Liver Cirrhosis After the Small Conduit Extracardiac Fontan.

A Comparative Analysis With the Lateral Tunnel.

 Abstract Presentation Sunday, April 28, 2024 11:43 a.m. Room 716
Rittal Mehta, MS, BDS Congenital Poster Session II

(Presenter)

 Navigating the Future of Pediatric Cardiovascular surgery: Insights and Innovation powered by ChatGPT. Poster Presentation Monday, April 29, 2024 8:00 a.m. Poster Area
Can Yerebakan, M.D. Congenital Poster Session II

(Presenter)

 Can Delayed Norwoods in High Risk Patients Achieve Similar Results than Primary Norwood for Low Risk Patients. Poster Presentation Monday, April 29, 2024 8:00 a.m. Poster Area
Arif Selcuk, M.D. Congenital Rapid Fire Orals – Theater Session III

(Presenter)

 Initial Rescue of a High-Risk Newborn by Atrial Kissing Procedure’ for Left Atrium Decompression and Bilateral Pulmonary Artery Banding. Case Video Presentation Monday, April 29, 2024 3:51 p.m. Theater 1
Yves d’Udekem, M.D., Ph.D. Congenital Disasters and Rescues

(Speaker)

 Mitral Valve Repair Techniques in Neonates and Infants’ Rather than a Specific Situation? Oral Presentation Tuesday, April 30, 2024 8:45 a.m. Room 716
Marius George Linguraru giving a lecture on AI

Artificial – and accelerated – intelligence: endless applications to expand health equity

In the complex world of pediatric diseases, researchers need access to data to develop clinical trials and the participation of vulnerable patients to develop new devices and therapies. Both are in short supply, given that most children are born healthy, and most severe pediatric diseases are rare.

That creates a dilemma: how do researchers build a foundation to advance new treatments? Enter artificial intelligence (AI).

“AI is the equalizer: accelerated intelligence for sick kids. No other advance on the horizon holds more promise for improving equity and access to pediatric healthcare when diseases are rare and resources are limited,” says Marius George Linguraru, D.Phil., M.A., M.Sc., the Connor Family Professor in Research and Innovation and principal investigator in the Sheikh Zayed Institute for Pediatric Surgical Innovation (SZI). “AI will shrink the distance between patient and provider, allowing our physicians and scientists to provide targeted healthcare for children more efficiently. The possibilities are endless.”

Why we’re excited

By pioneering AI innovation programs at Children’s National Hospital, Dr. Linguraru and the AI experts he leads are ensuring patients and families benefit from a coming wave of technological advances. The team is teaching AI to interpret complex data that could otherwise overwhelm clinicians. Their work will create systems to identify at-risk patients, forecast disease and treatment patterns, and support complex clinical decisions to optimize patient care and hospital resources. Already, the AI team at SZI has developed data-driven tools touching nearly every corner of the hospital:

  • AI for rheumatic heart disease (RHD): In partnership with Children’s National cardiology leaders, including Craig Sable, M.D., the Uganda Heart Institute and Cincinnati Children’s Hospital, the AI team has developed an algorithm that can use low-cost, portable ultrasound imaging to detect RHD in children and young adults, a disease that takes nearly 400,000 lives annually in limited-resource countries. Early testing shows the AI platform has the same accuracy as a cardiologist in detecting RHD, paving the way for earlier treatment with life-saving antibiotics. This year, Children’s National physicians will be in Uganda, screening 200,000 children with local cardiology experts and AI technology.
  • Newborn screening for genetic conditions with mGene: Working with Rare Disease Institute clinicians and Chief of Genetics and Metabolism Debra Regier, M.D., the AI team has built technology to detect rare genetic disorders, using an algorithm and a smartphone camera to identify subtle changes in facial features. Tested on patients from over 30 countries and published in The Lancet Digital Health, the application helps screen children for advanced care when a geneticist may not be within reach. With funding from the National Institutes of Health, Children’s National and its research partners are piloting a newborn screening program in the Democratic Republic of the Congo.
  • Pediatric brain tumors: To improve and personalize the treatment decisions for children with brain tumors, Dr. Linguraru’s team is working with Brain Tumor Institute Director Roger Packer, M.D., the Gilbert Family Distinguished Professor of Neurofibromatosis, on algorithms that can characterize and measure brain tumors with unprecedented precision. The team recently won the International Pediatric Brain Tumor Segmentation Challenge, distinguishing the Children’s National algorithm as among the best in the world.
  • Ultra-low field magnetic resonance imaging (MRI): With a grant from the Bill & Melinda Gates Foundation, the AI team is working alongside Children’s Hospital Los Angeles, King’s College London and the UNITY Consortium to expand global brain imaging capacity. The consortium is helping clinicians in limited-resource countries improve the treatment of neonatal neurological conditions, using AI to boost the quality of ultra-low field MRI and expand access to this portable and more affordable imaging option.
  • Federated learning: Children’s National has collaborated with NVIDIA and other industry leaders to accelerate AI advances through federated learning. Under this approach, institutions share AI models rather than data, allowing them to collaborate without exposing patient information or being constrained by essential data-sharing restrictions. The SZI team was the only pediatric partner invited to join the largest federated learning project of its kind, studying the lungs of COVID-19 patients. Details were published in Nature Medicine.

Children’s National leads the way

Looking ahead, the Children’s National AI team is pursuing a wide range of advances in clinical care. To support patients treated at multiple clinics, they are developing systems to harmonize images from different scanners and protocols, such as MRI machines made by different manufacturers. Similar work is underway to analyze pathology samples from different institutions consistently.

Automation is also making care more efficient. For example, using data from 1 million chest X-rays, the team is collaborating with NVIDIA to develop a conversational digital assistant that will allow physicians to think through 14 possible diagnoses.

Dr. Linguraru says he and his colleagues are galvanized by the jarring statistic that one in three children with a rare disease dies before age 5. While well-implemented AI initiatives can change outcomes, he says the work must be done thoughtfully.

“In the future, patients will be evaluated by human clinicians and machines with extraordinary powers to diagnose illness and determine treatments,” Dr. Linguraru said. “Our team at Children’s National is leading conversations about the future of pediatric healthcare with a focus on safety, resource allocation and basic equity.”

Learn more about our AI initiatives

Innovation leaders at Children’s National Hospital are building a community of AI caregivers through educational and community-building events. At the inaugural Symposium on Artificial Intelligence in 2023 at the Children’s National Research & Innovation Campus, experts from Virginia Tech, JLABS, Food and Drug Administration, Pfizer, Oracle Health, NVIDIA, AWS Health and elsewhere laid out a vision for using data to advance pediatric medicine. The symposium will return on Sept. 6.

Dr. Linguraru is the program chair of MICCAI 2024, the top international meeting on medical image computing and computer-assisted intervention and the preeminent forum for disseminating AI developments in healthcare. The conference is an educational platform for scientists and clinicians dedicated to AI in medical imaging, with a focus on global health equity. It will take place for the first time in Africa on Oct. 6-10.