Public Health

American Diabetes Association 84th Scientific Sessions logo

Children’s National at ADA 84th Scientific Sessions

American Diabetes Association 84th Scientific Sessions logoAmerican Diabetes Association 84th Scientific Sessions in Orlando, FL. The meeting is an opportunity for researchers and health care professionals to exchange knowledge on the latest scientific advances and breakthroughs in diabetes. Participants included:

Oral Presentations:

Poster Presentations:

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 lifechanging 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.

Drs. Donnelly and Goyal

Inspired to make a change

Drs. Donnelly and Goyal

Drs. Donnelly and Goyal lead our efforts to support survivors of violence with a focus on prevention.

Children’s National Hospital created the Youth Violence Intervention Program in 2022 to build connections with patients and prevent future violence through follow-up support for them and their families.

The team works under the leadership of Katie Donnelly, M.D., M.P.H., the program’s medical director who is an emergency medicine physician. They care for children who are survivors of community violence, including gunshot wounds, stabbings or assaults. The program has cared for about 250 youth to date.

Dr. Donnelly and Monika Goyal, M.D., MSCE, associate division chief of Emergency Medicine and Trauma Services, lead our efforts to support survivors of violence with a focus on prevention. Dr. Goyal leads the Safer through Advocacy, Firearm Education and Research (SAFER) group. It works on a local and national level to reduce firearm injuries and deaths among children.

We spoke Drs. Donnelly and Goyal about their goals and the impact of this work.

The interview is edited for brevity.

What inspired you to launch the youth violence intervention program and SAFER?

Dr. Donnelly: Injury is a part of life, and it is something I can never fully protect any child from. But for me, the toughest cases are those caused by violence, particularly gun violence. We are seeing more kids come in with their second or third injury. Violence is a chronic disease that runs much deeper than a single injury. I wanted to do more to break the cycle and address its root causes, such as disconnection from school, unaddressed emotional trauma and poverty. I researched other hospital-based violence intervention programs and learned about the D.C. Office of Victim Services and Justice Grants. We established the program with funding from that entity.

Dr. Goyal: As we started to hear more about gun violence impacting youth, I felt like I needed to do something. Every time I care for a child in our trauma bay who suffered a gunshot wound, it just takes a piece of me. I co-founded SAFER in 2016 to make our communities safer for children so they can live healthy and fulfilling lives. It began with four physicians and has grown into a multidisciplinary team of more than 40 Children’s National experts who volunteer their time in addition to their regular duties.

What keeps you going when challenges feel insurmountable?

Dr. Donnelly: I try to focus on the kids’ successes. Last year we had several teens in the program enroll in D.C.’s Mayor Marion S. Barry Summer Youth Employment Program. They were so proud to show off the debit cards they received to process their earnings. I also think about the kids that our team has helped get back into school who are doing well. These successes are things you can’t always measure with graphs or reports. But I hold them close to my heart, and they are all inspiring.

Dr. Goyal: Gun violence has a ripple effect. Even if a child has not personally experienced gun violence, it may still touch their lives. They may have family members, neighbors or friends who are victims. Their neighborhoods may have experienced gun violence, so it impacts a child’s ability to feel safe. It is devastating. Our work through SAFER keeps me going. We are doing this by sharing evidence-based interventions, advocating for policies that protect kids, and educating families about safe firearm storage and use, among other efforts.

What do these efforts mean to you?

Dr. Donnelly: The work we do gets us a seat at the table to impact larger change, and that is gratifying. Children’s National has become the expert on pediatric firearm injuries in the D.C. region, and we work with local governments on gun violence prevention legislation. I also appreciate opportunities to share our knowledge with the community. I recently spoke at a Teach for America conference about how young teachers can talk about gun violence and safety in their classrooms.

Dr. Goyal: There have been so many feelings of helplessness, and we know we can’t make a difference in every child’s or family’s life. But we are committed to tackling this crisis and trying to prevent tragedies from happening again. It is humbling to be part of this work.

How can philanthropy support these programs?

Dr. Donnelly: External support is essential to sustaining the Youth Violence Intervention Program. We are thankful for the government funding to keep this work going, but D.C. has faced budget cuts, so it’s not always guaranteed. Also, most of the critical psychosocial support we provide is not reimbursed by insurance. This includes things like food and housing resources and transportation costs for kids to get to school or medical appointments safely. Philanthropic support would ensure that we can continue this work and expand the program. We need more Violence Intervention specialists and a trauma-focused mental healthcare provider so our patients don’t have to wait for services. There is much more we can do to ensure that families have what they need to thrive.

Dr. Goyal: I agree, there are so many opportunities for growth. We were grateful to receive a generous gift from the Honorable Ann Brown (former commissioner of the U.S. Consumer Product Safety Commission) to support some of our prevention efforts. These include expanding screenings in the E.D., developing trainings to help youth de-escalate conflict and advancing research to increase awareness of gun safety. Additional support would allow us to scale and grow our programs so we can make an even bigger impact.

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

abstract illustration of a head and brain

Funding opportunity for medical devices addressing youth substance misuse, addiction

Pediatric medical device grant announcementThe Alliance for Pediatric Device Innovation (APDI), a nonprofit consortium led by Children’s National Hospital and funded through the Food and Drug Administration (FDA), today announced a grant opportunity for pediatric medical devices that improve the monitoring, diagnosis or treatment of youth suffering from substance use disorder and addiction. Grants up to $50,000 each are available for pediatric-specific solutions selected by a panel of experts from submitted proposals. Up to $150,000 in grant funds are available for distribution through this program.

The National Institutes of Health (NIH) reports that over 3.6 million U.S. youth, ages 12 to 17, used illicit drugs in 2022. In that same period, an average of 22 youth, ages 12 to 18, died weekly from an overdose. Often, these adolescents did not show the expected warning signs before an overdose, such as problems with alcohol, drugs or prior substance use treatment. Of the teens and tweens who fatally overdosed, only 1 in 10 had a history of treatment for a substance use problem, and only 1 in 7 had ever experienced a prior nonfatal overdose.

“Tragically, drug overdose is now the third leading cause of death among adolescents and, to improve outcomes, we need medical technologies that are specifically designed for the youth,” says Kolaleh Eskandanian, Ph.D., M.B.A., vice president and chief innovation officer at Children’s National and APDI principal investigator and program director. “Teens and tweens are such enthusiastic users of technology. We believe that the time is right for new health technology solutions that can save lives and improve the health of our young people.”

APDI’s call for proposals coincides with the National Advisory Council on Drug Abuse (NACDA) approval last month of the concept “Promoting Medical Device Development for Youth Affected by Drug Addiction and Substance Misuse,” which describes potential funding opportunities. In anticipation of future federal funding from the National Institute on Drug Abuse (NIDA), APDI is providing early support by identifying potential innovations. Along with APDI grant funding, the consortium is providing awardees with support services across all phases of the medical device product lifecycle, including facilitating access to NIDA technical assistance.

Dr. Eskandanian described the kinds of pediatric-focused innovations the grant seeks to attract, which align with NACDA’s listed priorities. They include, but are not limited to, the following:

  • Artificial intelligence-based algorithms that collect, integrate, analyze and visualize various types of data related to the diagnosis or treatment of drug misuse and addiction in youth.
  • Stand-alone or add-on digital therapeutics focused on behavioral health interventions to diagnose, treat, prevent and mitigate drug misuse and addiction.
  • Wearables and connected digital therapeutics at a point-of-need intended to detect, diagnose and treat opioid-induced respiratory depression.
  • Therapeutic devices, such as neuromodulation, intended to improve SUD treatment outcomes and prevent recurrence.

As most medical devices are designed for adults, Dr. Eskandanian notes that this limits useability and acceptance by adolescents. She adds that existing algorithms supporting medical devices are often based on adult data and are not optimized for adolescents, limiting their usefulness.

“Our goal is to bring more effective pediatric medical devices to market to address the alarming rate of harm substance misuse and addiction is creating for young people and their families,” says Dr. Eskandanian. “Since this is an area of focus for NIDA, we see an opportunity to help create a pipeline of qualified companies that can apply for NIDA follow-on funding.”

Interested innovators can learn more and apply for the APDI funding opportunity online at innovate4kids.org. The application deadline is July 30, 2024.

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

smoke coming from chimney stacks

Call for action on healthcare sustainability

smoke coming from chimney stacks

New research reveals the U.S. healthcare system’s contribution to greenhouse gas (GHG) emissions and climate change is disproportionately high and harms the public.

A recent review reveals the U.S. healthcare system’s contribution to greenhouse gas (GHG) emissions and climate change is disproportionately high and harms the public. The findings are part of a series of articles being co-published by Open Forum Infectious Diseases and the Journal of the Pediatric Infectious Diseases Society, which highlight the effect of climate change and air pollution on global health and infectious diseases.

Our current policies and practices on healthcare waste and emissions do not do justice to the health of the children we want to improve,” said Shreya Doshi, pediatric fellow at Children’s National. “The U.S. contributes to 27% of the global healthcare industry GHG emissions (greater than any other country). Infectious diseases professionals can use their background in antimicrobial stewardship and infection prevention and control to lead projects in healthcare sustainability and make a difference.”

Q: How will this work benefit patients?

A: Ultimately, when different specialties and organizations in healthcare make changes to their practices, we will have fewer GHG emissions and a healthier planet for our patients. There is also strong evidence that climate change affects vulnerable communities and countries disproportionately and we hope to change that. We want to provide safe healthcare to children from the current generation without taking away resources from the future generation.

Q: What’s been the hold up in the field?

A: Lack of awareness and time needed for change in practices and policies. For any organization leadership buy-in is needed when it comes to healthcare sustainability. Children’s National actually received a sustainability award two years ago for reducing anesthetic gases.

Q: What did you find that excites you? What are you hoping to discover?

A: There is so much yet to be explored at the intersection of infectious diseases and healthcare sustainability and that’s exciting! No matter what you do within the healthcare field — there is room for improvement and room for reduction in waste and GHG emissions. It is time to reassess and, rethink and innovate our practices. Having collaborators in other specialties who are passionate about the sustainability can help us move the needle faster. Lastly, it is important to know that work in healthcare sustainability has huge cost savings, so it’s a win for the financial health of the institution and for the planet!

You can read the full study, Healthcare Sustainability to Address Climate Change: Call for Action to the Infectious Diseases Community, in the Open Forum Infectious Diseases and the Journal of the Pediatric Infectious Diseases Society.

Jennifer Cully

Jennifer Cully, D.M.D, M.Ed., appointed division chief of Oral Health

Jennifer Cully

“I am honored to continue my service to Children’s National by stepping into this leadership role,” said Dr. Cully.

Children’s National Hospital has appointed Jennifer Cully, D.M.D, M.Ed., as division chief of Oral Health.

Dr. Cully is currently a pediatric dentist and director of research for the Division of Oral Health at Children’s National, where she manages the division’s research initiatives. She’s also an associate professor of pediatrics at George Washington University.

“I am honored to continue my service to Children’s National by stepping into this leadership role,” said Dr. Cully.

Dr. Cully earned her bachelor’s degree in biology from the College of William & Mary, her Doctor of Medicine in Dentistry degree from the University of Medicine and Dentistry of New Jersey and received a certificate in pediatric dentistry from Children’s National. She received her master’s on Education from the University of Cincinnati. Dr. Cully is a fellow of the American Academy of Pediatric Dentistry and the American College of Dentists and will be inducted as a fellow in the International College of Dentists this fall.

“As a leader in the field of pediatric dentistry, Dr. Cully will play an integral role in helping to advance our comprehensive oral health program,” said Dr. Nathaniel Beers, executive vice president of Community and Population Health.

person circling items on mental health summit agenda

Unique alliance expands access to mental health support for kids

CareFirst BlueCross BlueShield (CareFirst), one of the largest not-for-profit healthcare organizations in the nation, and Children’s National Hospital, a top-ranked children’s hospital located in Washington, D.C., announced a new alliance that’s taking a unique approach to help address the youth mental health crisis and improve health outcomes.

As part of this alliance, CareFirst has increased the reimbursement for preventive and mental health care for primary care providers who go through specialized mental health training focused on depression, suicide prevention, anxiety, ADHD and eating disorders. The training is offered through the Pediatric Health Network, the clinically integrated network of healthcare providers for Children’s National, to its more than 1,500 members including more than 700 primary care physicians.

In 2021, U.S. Surgeon General Dr. Vivek Murthy issued an advisory detailing an urgent youth mental health crisis. Unfortunately, access to pediatric mental health care is a national challenge, and for children and families, timely and effective support can be elusive. Empowering primary care providers with specialized training will help break down barriers and reshape care delivery.

“Providers face challenges due to limited resources and insufficient support in addressing pediatric mental health needs. CareFirst’s commitment to increasing reimbursement for mental health care underscores the integral role of primary care providers in this space,” says Nathaniel Beers, M.D., executive vice president for Community and Population Health for Children’s National Hospital. “With these trainings, our providers gain the knowledge, tools and confidence to handle sensitive conversations, offer vital support and make informed referrals when needed.”

The alliance executes a value-based care payment model for the Children’s National network of community physicians, enhancing benefits to offer more value to physicians and patients while aiming to drive improved outcomes, patient experience and coordination in care. By embedding mental health care within the familiar confines of primary care settings, this initiative ensures children receive timely interventions in an environment they trust.

This work to improve access to mental health services is just one part of the broader unique payer-provider alliance between CareFirst and Children’s National to address healthcare disparities and social determinants of health. Targeted pediatric interventions are set upon three pillars:

  • Value-based care
  • Community health initiatives
  • Member benefit enhancements

Each pillar is delivered and informed by experts from both organizations with distinct tactics and funding designed for three key priority health conditions:

  • Behavioral and mental health
  • Diabetes
  • Infant mortality

“As the lines continue to blur between payers and providers, with vertical integration and the reimbursement shift from volume to value, insurers and hospitals need to continue to evolve their relationships with each other,” said Brian Wheeler, executive vice president of Health Services for CareFirst. “This model aims to address the need for affordable healthcare, employing a patient-centric approach that encourages seamless treatment for the patient and provider.”

The next major program in development is focused on improving diabetes care through early diagnosis to lessen vulnerability and severity and improve long-term positive health outcomes.

Community health initiatives will continue to be developed through the Children’s National Child Health Advocacy Institute and Community Health programs with the support of CareFirst’s philanthropic efforts.

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

 

Illustration showing phthalate exposure during cardiopulmonary bypass

Pediatric heart patients exposed to plastic chemicals during cardiopulmonary bypass

Children undergoing cardiac surgery using cardiopulmonary bypass are exposed to high levels of plastic chemical additives called phthalates, including DEHP, according to the largest single center study to date to measure this exposure. The findings were authored by a multi-disciplinary group from Children’s National Hospital and appear in the journal Transfusion.

What is it?

Di(2-ethylhexyl) phthalate (DEHP) is one of the most commonly used plasticizers in polyvinyl chloride (PVC) plastics, making up 40% to 80% of the finished weight of medical-grade tubing and blood storage bags. The study’s primary goal was to quantify three aspects of pediatric cardiac surgery: the phthalate exposure with and without cardiopulmonary bypass (the heart and lung machine), the time it takes for phthalates to clear after surgery and any correlations between higher phthalate exposures and postoperative complications.

The authors suggested that, like infants in the NICU exposed to various medical equipment, children on cardiopulmonary bypass are likely exposed to significant DEHP levels from blood products, bypass circuit components, and endotracheal tubes, potentially impacting postoperative outcomes.

Why does it matter?

Despite daily phthalate exposure in the general population, studies link high phthalate levels to developmental delays in language and motor skills. Phthalates accumulate in the hearts of infants undergoing umbilical catheterizations or blood transfusions. This is worrisome as even low-dose environmental exposure correlates with higher risks of overall and cardiovascular-related mortality.

Knowing these risks exist, it is important to understand these exposures, what causes them and implement measures to mitigate them, safeguarding medically fragile children. Regulatory actions in NICUs have reduced DEHP-containing plastics, yet no such efforts have been made for children on cardiopulmonary bypass.

The study also found some associations between postoperative complications and higher levels of phthalates, especially in younger children. They write, “it is plausible that a combination for risk factors (young age, longer CPB duration, increased phthalate exposure) collectively contribute to these complications.” More research is needed to understand the association and the impact of phthalates on how children recover from surgery.

Children’s National leads the way

The study involved 110 pediatric patients undergoing 122 cardiac surgeries at Children’s National, marking the largest single-center investigation into phthalate exposures in cardiac surgery. Led by a multidisciplinary team, including divisions of Transfusion Medicine and Cardiac Surgery, along with researchers from the Sheikh Zayed Institute for Pediatric Surgical Innovation, the study’s findings are some of the first to quantify that pediatric cardiac surgery patients are exposed to greater levels of these phthalate chemicals from plastic medical products, with increasing exposure the longer they require cardiopulmonary bypass. This is especially true when the bypass uses a prime based on red blood cells.

What’s next

The teams are exploring strategies to minimize chemical exposures, such as:

  • Using freshly donated blood products (made possible at Children’s National by the unique on-site Blood Donor Center).
  • Storing blood in DEHP-free storage bags prior to use when possible.
  • Increasing use of cell-saver equipment, which washes red blood cell products and removes extracellular contaminants.
  • At Children’s National, cardiac surgeons prioritize the use of recently collected, washed red blood cells in cardiopulmonary bypass cases, especially for younger and/or smaller patients.

“These exposures will affect patients undergoing pediatric cardiac surgery at any institution,” says first author Devon Guerrelli, M.S. “But we hope understanding what’s causing the exposures will help operating rooms around the United States take immediate small steps, like using washed red blood cells, to begin mitigating these exposures as soon as possible.”

Senior author Nikki Posnack, Ph.D., adds that the implications of phthalates on health are tremendous. “Studies have shown that heightened phthalate exposure increases your risk of all-cause and cardiovascular mortality,” she said. “Now is the time to support research efforts to understand how plastic chemicals damage the heart and to investigate strategies to reduce their overall impact.”

Read the study:
Prevalence and clinical implications of heightened plastic chemical exposure in pediatric patients undergoing cardiopulmonary bypass

Nathan Kuppermann, M.D., M.P.H.

Nathan Kuppermann, M.D., M.P.H., named chief academic officer and chair of Pediatrics

Nathan Kuppermann, M.D., M.P.H.

Dr. Kuppermann will oversee research, education and innovation for the Children’s National Research Institute as well as academic and administrative leadership in the Department of Pediatrics at George Washington University School of Medicine & Health Services.

Children’s National Hospital has appointed Nathan Kuppermann, M.D., M.P.H., as its new executive vice president (EVP), chief academic officer (CAO) and chair of Pediatrics. In this role, Dr. Kuppermann will oversee research, education and innovation for the Children’s National Research Institute as well as academic and administrative leadership in the Department of Pediatrics at George Washington University School of Medicine & Health Services. He comes to Children’s National from UC Davis Health and UC Davis School of Medicine in Sacramento, CA, and will start in September.

After a national search, Dr. Kuppermann stood out for his exceptional contributions to clinical and academic research, focusing on pediatric emergency care, and his dedication to mentorship. For the past 18 years he has served as the Bo Tomas Brofeldt endowed chair of the Department of Emergency Medicine and is currently a distinguished professor of Emergency Medicine and Pediatrics, and the associate dean for Global Health at UC Davis Health.

“I was drawn to Children’s National by its nationally recognized work and dedication to innovation and team science,” says Dr. Kuppermann. “I’m eager to contribute to the remarkable work being done in both the research and education space to continue to improve the understanding, prevention and treatment of childhood diseases.”

Dr. Kuppermann is a pediatric emergency medicine physician and clinical epidemiologist, and a leader in emergency medical services for children, particularly in multicenter research. With more than 300 peer-reviewed research publications to his credit, Dr. Kuppermann has contributed extensively to high-impact journals including the New England Journal of Medicine, JAMA, BMJ and the Lancet.

“The Children’s National Research Institute is a key part of our health system’s ecosystem – it’s where we nurture innovation and pursue the most promising research,” says Michelle Riley-Brown, MHA, FACHE, president and CEO of Children’s National. “Dr. Kuppermann’s unwavering commitment to excellence in pediatric healthcare, research and innovation set him apart in a competitive field. I am confident he will advance our efforts in making breakthrough discoveries for kids everywhere.”

Dr. Kuppermann received his undergraduate degree from Stanford University, his medical degree from UC San Francisco School of Medicine and his Master of Public Health degree from the Harvard School of Public Health. He completed a pediatrics residency and chief residency at Harbor-UCLA Medical Center and a fellowship in Pediatric Emergency Medicine at Boston Children’s Hospital.

He has been recognized nationally and internationally for his research and mentorship. He was a Fulbright Distinguished Scholar in the U.K. and in 2010 was elected to the National Academy of Medicine. In 2022, he received the Maureen Andrew Mentor Award from the Society for Pediatric Research.

“Dr. Kuppermann’s leadership will undoubtedly propel the hospital’s efforts in advancing pediatric healthcare innovation, reinforcing Children’s National as a top-ranking institution,” says Horacio Rozanski, chair of the Children’s National Board of Directors. “We look forward to the positive impact he will make to the hospital’s overall mission, as well as its research and academic endeavors.”

Meghan Delaney, D.O., M.P.H.

Experts form Blood D.E.S.E.R.T Coalition to address global blood crisis

Meghan Delaney, D.O., M.P.H.

“The world does not have enough blood and the lack of blood is not distributed equally,” said Dr. Delaney. “Poor and rural communities are disproportionately affected with having low access to life-saving blood transfusion.”

Meghan Delaney, D.O., M.P.H., chief of Pathology and Lab Medicine and director of Transfusion Medicine at Children’s National Hospital, is among 17 global experts participating in a new collaborative initiative aimed at tackling the critical challenge of severe blood scarcity in rural areas. The coalition, known as the Blood D.E.S.E.R.T. Coalition, published a paper in Lancet Global Health outlining its recommendations for addressing the immediate need for blood through short-term strategies.

“The world does not have enough blood and the lack of blood is not distributed equally,” said Dr. Delaney. “Poor and rural communities are disproportionately affected with having low access to life-saving blood transfusion. This causes individuals to forego essential medical treatments, facing the consequences of morbidity or mortality, or to travel great distances to reach a facility that can give a blood transfusion. Addressing these disparities in basic healthcare access should be a global concern.”

Read the press release here.

boy giving his teacher a high five

Improving health outcomes by addressing chronic absenteeism

boy giving his teacher a high five

Through CARE program, parents and caregivers have the opportunity to consent to share their child’s attendance information with their child’s healthcare team. The team then provides outreach and medical attention to children who might be missing school.

School absenteeism is a national crisis. Chronic absenteeism, defined as missing 10% or more of the school year for excused and/or unexcused absence, is soaring. With rates of chronic absenteeism at 43% in Washington, D.C., and data showing clear connections between academic attainment, graduation rates, long-term health and life expectancy, school absenteeism is a critical health and educational equity issue for children in the nation’s capital.

The big picture

To combat this issue, Children’s National Hospital has partnered with District of Columbia Public Schools (DCPS) and other local partners to develop the Collaborative for Attendance Resources in Education and Health (CARE-H). Funded by the United Health Foundation, CARE-H is a cross-sector, multidisciplinary data-sharing program. Parents and caregivers have the opportunity to consent to share their child’s attendance information with their child’s healthcare team. The team then provides outreach and medical attention to children that might be missing school.

Children’s National Hospital leads the way

Each month, team members from primary care at Children’s National conduct outreach to patients and families who are experiencing barriers to school attendance, and assist families with referrals to primary care, subspecialty, mental health, oral health appointments and other social resources. “We know it is important to help families with the many medical and social barriers that may prevent them from attending school, and as their medical home, we are fortunate to have the ability to connect them with these important resources,” stated Jaytoya Manget, NP, DNP, FNP, Quality Improvement Lead for the CARE-H program at Children’s National.

During the 2022-2023 school year, the team conducted nearly 2,700 minutes of outreach and generated over 70 referrals for medical appointments and social resources. “A more supportive framework and holistic approach around attendance by the schools has helped promote acceptance of the hospital’s outreach, as has the trust its healthcare providers have established with their patients,” said Danielle Dooley, M.D., M.Phil., a pediatrician and medical director of Community Affairs and Population Health at Children’s National.

Children’s National also established a regional learning collaborative, with partners from Trenton, NJ and Delaware who have developed similar attendance data-sharing programs based on the work done by Children’s National. “I hope that through our collaboration, this model can be used to address chronic absenteeism across the nation,” said Dr. Dooley.

Members of the Columbia Zika virus research team

School entry neurodevelopmental outcomes of Zika-exposed Colombian children

Members of the Columbia Zika virus research team

The Children’s National Hospital Zika Research Team and collaborators from Biomelab, in Barranquilla, Colombia take a picture after a study visit in Sabanalarga, Colombia following the neurodevelopmental outcomes of children who had in utero exposure to Zika virus. Pictured from Children’s National Hospital: Dr. Sarah Mulkey, Regan Andringa-Seed, Margarita Arroyave-Wessel, and Dr. Madison Berl.

The long-term neurodevelopmental effects of antenatal Zika virus (ZIKV) exposure in children without congenital Zika syndrome (CZS) remain unclear, as few children have been followed to the age of starting primary school.

In a new study published in Pathogens, researchers found children with in utero ZIKV exposure appear to have an overall positive developmental trajectory at 4 to 5 years of age but may experience risks to neurodevelopment in areas of emotional regulation and adaptive mobility.

The hold up in the field

Children who were born during the ZIKV epidemic and who had in utero exposure to ZIKV are only now at the age to start school. Child neurodevelopmental outcome data has not been reported at the age of school entry for children with antenatal ZIKV exposure who do not have the severe birth defects of CZS.

“As these children approach the early school-age years, we aim to examine whether there are neurodevelopmental differences in executive function, motor ability, language development or scholastic skills as compared to a group of unexposed control participants from the same communities in Colombia,” says Sarah Mulkey, M.D., Ph.D., prenatal-neonatal neurologist in The Zickler Family Prenatal Pediatrics Institute at Children’s National Hospital and lead author of the study.

Moving the field forward

Building on previous findings, this study presents the longitudinal outcomes of a well-characterized Colombian cohort of ZIKV-exposed children without CZS at ages 4 to 5 years. These children have been seen for neurodevelopmental follow-up as infants and toddlers at approximately 6 months, 18 months and 3 years of age as part of an international collaboration between researchers in Barranquilla, Colombia and at Children’s National beginning in 2016. The objective of this study was to assess the multi-domain neurodevelopmental outcomes in 4 to 5-year-old children with antenatal ZIKV exposure without CZS compared to unexposed controls in Colombia.

Why we’re excited

Many of the children who had antenatal ZIKV exposure are making good progress in multiple areas of their neurodevelopment. However, the researchers found that children with antenatal ZIKV exposure have differences in areas of emotional regulation, executive function, mood and behavior which may relate to virus exposure during their early brain development.

“These areas of brain function are important for future academic achievement, employment, mental health and social relationships,” says Dr. Mulkey. “So, it will be important to continue to follow these children at older ages when they start school.”

Children’s National leads the way

Children’s National is a leader in conducting outcome studies of children born following antenatal ZIKV exposure. This study follows children in Colombia who are now 5 years old who were first studied while they were in the womb. These children have contributed unique longitudinal understanding to early child neurodevelopment following in utero exposure to ZIKV.

Dr. Mulkey is committed to studying the long-term neurodevelopmental impacts that viruses like Zika and SARS-CoV-2 have on infants born to mothers who were infected during pregnancy through research with the Congenital Infection Program at Children’s National and in collaboration with colleagues in Colombia.

Additional Children’s National authors include Meagan Williams M.S.P.H., C.C.R.C., senior research coordinator; Regan Andringa-Seed, clinical research coordinator, Margarita Arroyave-Wessel, clinical research coordinator; L. Gilbert Vezina, M.D., director, Neuroradiology Program; Dorothy Bulas, M.D., chief, Diagnostic Imaging and Radiology; Robert Podolsky, biostatistician.

Researchers showing paintings of zika virus

Dr. Sarah Mulkey and Children’s National clinical research coordinators in the Prenatal Pediatrics Institute and the Division of Pediatric Infectious Diseases display their paintings of the Zika virus. Pictured from left to right: Manuela Iglesias, Elizabeth Corn, Dr. Sarah Mulkey, Emily Ansusinha and Meagan Williams.

A bag of food from the food pharmacy

Optimizing pediatric diabetes management: Integrating a vital food pharmacy approach

A bag of food from the food pharmacy

Weighing approximately 50 pounds, the food packages are rich in protein, fiber and healthy fats, and include fruits and vegetables.

Social Determinants of Health are an essential focus in providing equitable diabetes care. Food and nutrition are integral parts of Type 1 diabetes (T1D) and Type 2 diabetes (T2D) management. Food insecurity increases the risk for T2D and is associated with higher A1C levels and hospitalization in those with diabetes.

The big picture

A study published in the American Diabetes Association Journal Diabetes assessed food insecurity among families with diabetes during their clinical visits. As of June 2023, 62% of the participants screened positive for food insecurity. In response, Children’s National Hospital partnered with the Capital Area Food Bank to create a food pharmacy within the diabetes clinic that supplies an average of 117 families per month with additional groceries to support those affected by diabetes.

What does this mean?

These packages are designed to sustain a family of four for three days. Weighing approximately 50 pounds, pantry essentials are rich in protein, fiber and healthy fats, and include fruits and vegetables. Additionally, the packages come with recipe cards that offer helpful suggestions for replacing or supplementing items, enabling individuals to obtain nutritious food beyond their diabetes appointments.

“We hope that these findings and future research will help bring to light the importance of food security, in addition to medication, in managing chronic illness,” said Alexis Richardson, M.S., R.D., L.D.N., C.D.C.E.S., food pharmacy founder and diabetes educator at Children’s National. “This research also opens up the possibilities for other studies on the effect food insecurity and Type 2 diabetes.”

What’s been the hold-up in the field?

Providing 50 pounds per set to over 100 families each month requires a substantial area for a food pharmacy. The storage facility must adhere to food safety standards and comply with Department of Health regulations. Additionally, all staff members are required to be ServSafe certified. Shortages in staffing and funding pose significant challenges. Clear procedures are needed for tasks such as placing orders, receiving food deliveries, managing loading docks and handling the refrigeration and shelving of bags.

Over the years, Children’s National has engaged with numerous programs, sharing their experiences and challenges to offer guidance and assist other institutions in establishing their own food pharmacies.

collage of news outlet logos

Children’s National in the News: 2023

collage of news outlet logos
Explore some of the notable medical advancements and stories of bravery that defined 2023, showcasing the steadfast commitment of healthcare professionals at Children’s National Hospital and the resilient spirit of the children they support. Delve into our 2023 news highlights for more.

1. COVID during pregnancy dramatically increases the risk of complications and maternal death, large new study finds

According to a study published in British Medical Journal Global Health, women who get COVID during pregnancy are nearly eight times more likely to die and face a significantly elevated risk of ICU admission and pneumonia. Sarah Mulkey, M.D., prenatal-neonatologist neurologist, discussed findings based on her work with pregnant women and their babies.
(Fortune)

2. Rest isn’t necessarily best for concussion recovery in children, study says

A study led by Christopher Vaughan, Psy.D., pediatric neuropsychologist, suggests that — despite what many people may presume — getting kids back to school quickly is the best way to boost their chance for a rapid recovery after a concussion.
(CNN)

3. Pediatric hospital beds are in high demand for ailing children. Here’s why

David Wessel, M.D., executive vice president, chief medical officer and physician-in-chief, explained that one reason parents were still having trouble getting their children beds in a pediatric hospital or a pediatric unit after the fall 2022 respiratory surge is that pediatric hospitals are paid less by insurance.
(CNN)

4. Anisha Abraham details impact of social media use on children: ‘True mental health crisis’

Anisha Abraham, M.D., M.P.H., chief of the Division of Adolescent and Young Adult Medicine, joined America’s Newsroom to discuss the impact social media access has had on children’s mental health.
(FOX News)

5. Saving Antonio: Can a renowned hospital keep a boy from being shot again?

After 13-year-old Antonio was nearly killed outside his mom’s apartment, Children’s National Hospital went beyond treating his bullet wounds. Read how our Youth Violence Intervention Program team supported him and his family during his recovery.
(The Washington Post)

6. Formerly conjoined twins reunite with doctors who separated them

Erin and Jade Buckles underwent a successful separation at Children’s National Hospital. Nearly 20 years later they returned to meet with some of the medical staff who helped make it happen.
(Good Morning America)

7. Asthma mortality rates differ by location, race/ethnicity, age

Shilpa Patel, M.D., M.P.H., medical director of the Children’s National IMPACT DC Asthma Clinic, weighed in on a letter published in Annals of Allergy, Asthma & Immunology, asserting that the disparities in mortality due to asthma in the United States vary based on whether they occurred in a hospital, ethnicity or race and age of the patient.
(Healio)

8. How one Afghan family made the perilous journey across the U.S.-Mexico border

After one family embarked on a perilous journey from Afghanistan through Mexico to the U.S.-Mexico border, they eventually secured entry to the U.S. where Karen Smith, M.D., medical director of Global Services, aided the family’s transition and provided their daughter with necessary immediate medical treatment.
(NPR)

9. When a child is shot, doctors must heal more than just bullet holes

With the number of young people shot by guns on the rise in the U.S., providers and staff at Children’s National Hospital are trying to break the cycle of violence. But it’s not just the physical wounds though that need treating: young victims may also need help getting back on the right track — whether that means enrolling in school, finding a new group of friends or getting a job.
(BBC News)

10. This 6-year-old is a pioneer in the quest to treat a deadly brain tumor

Callie, a 6-year-old diagnosed with diffuse intrinsic pontine glioma, was treated with low-intensity focused ultrasound (LIFU) at Children’s National Hospital and is the second child in the world to receive this treatment for a brain tumor. LIFU is an emerging technology that experts like Hasan Syed, M.D., and Adrianna Fonseca, M.D., are trialing to treat this fatal childhood brain tumor.
(The Washington Post)

11. F.D.A. approves sickle cell treatments, including one that uses CRISPR

The FDA approved a new genetic therapy, giving people with sickle cell disease new opportunities to eliminate their symptoms. David Jacobsohn, M.B.A., M.D., confirmed that Children’s National Hospital is one of the authorized treatment centers and talked about giving priority to the sickest patients if they are on Vertex’s list.
(The New York Times)

12. 6-year-old fulfils wish to dance in the Nutcracker

After the potential need for open-heart surgery threatened Caroline’s Nutcracker performance, Manan Desai, M.D., a cardiac surgeon, figured out a less invasive procedure to help reduce her recovery time so she could perform in time for the holidays.
(Good Morning America)

2023 with a lightbulb

The best of 2023 from Innovation District

2023 with a lightbulbAdvanced MRI visualization techniques to follow blood flow in the hearts of cardiac patients. Gene therapy for pediatric patients with Duchenne muscular dystrophy. 3D-printed casts for treating clubfoot. These were among the most popular articles we published on Innovation District in 2023. Read on for our full list.

1. Advanced MRI hopes to improve outcomes for Fontan cardiac patients

Cardiac imaging specialists and cardiac surgeons at Children’s National Hospital are applying advanced magnetic resonance imaging visualization techniques to understand the intricacies of blood flow within the heart chambers of children with single ventricle heart defects like hypoplastic left heart syndrome. The data allows surgeons to make critical corrections to the atrioventricular valve before a child undergoes the single ventricle procedure known as the Fontan.
(3 min. read)

2. Children’s National gives first commercial dose of new FDA-approved gene therapy for Duchenne muscular dystrophy

Children’s National Hospital became the first pediatric hospital to administer a commercial dose of Elevidys (delandistrogene moxeparvovec-rokl), the first gene therapy for the treatment of pediatric patients with Duchenne muscular dystrophy (DMD). Elevidys is a one-time intravenous gene therapy that aims to delay or halt the progression of DMD by delivering a modified, functional version of dystrophin to muscle cells.
(2 min. read)

3. New model to treat Becker Muscular Dystrophy

Researchers at Children’s National Hospital developed a pre-clinical model to test drugs and therapies for Becker Muscular Dystrophy (BMD), a debilitating neuromuscular disease that is growing in numbers and lacks treatment options. The work provides scientists with a much-needed method to identify, develop and de-risk drugs for patients with BMD.
(2 min. read)

4. First infants in the U.S. with specially modified pacemakers show excellent early outcomes

In 2022, five newborns with life-threatening congenital heart disease affecting their heart rhythms were the first in the United States to receive a novel modified pacemaker generator to stabilize their heart rhythms within days of birth. Two of the five cases were cared for at Children’s National Hospital. In a follow-up article, the team at Children’s National shared that “early post-operative performance of this device has been excellent.”
(2 min. read)

5. AI: The “single greatest tool” for improving access to pediatric healthcare

Experts from the Food and Drug Administration, Pfizer, Oracle Health, NVIDIA, AWS Health and elsewhere came together to discuss how pediatric specialties can use AI to provide medical care to kids more efficiently, more quickly and more effectively at the inaugural symposium on AI in Pediatric Health and Rare Diseases, hosted by Children’s National Hospital and the Fralin Biomedical Research Institute at Virginia Tech.
(3 min. read)

6. AAP names Children’s National gun violence study one of the most influential articles ever published

The American Academy of Pediatrics (AAP) named a 2019 study led by clinician-researchers at Children’s National Hospital one of the 12 most influential Pediatric Emergency Medicine articles ever published in the journal Pediatrics. The findings showed that states with stricter gun laws and laws requiring universal background checks for gun purchases had lower firearm-related pediatric mortality rates but that more investigation was needed to better understand the impact of firearm legislation on pediatric mortality.
(2 min. read)

7. Why a colorectal transition program matters

Children’s National Hospital recently welcomed pediatric and adult colorectal surgeon Erin Teeple, M.D., to the Division of Colorectal and Pelvic Reconstruction. Dr. Teeple is the only person in the United States who is board-certified as both a pediatric surgeon and adult colorectal surgeon, uniquely positioning her to care for people with both acquired and congenital colorectal disease and help them transition from pediatric care to adult caregivers.
(3 min. read)

8. First-of-its-kind holistic program for managing pain in sickle cell disease

The sickle cell team at Children’s National Hospital received a grant from the Founders Auxiliary Board to launch a first-of-its-kind, personalized holistic transformative program for the management of pain in sickle cell disease. The clinic uses an inter-disciplinary approach of hematology, psychology, psychiatry, anesthesiology/pain medicine, acupuncture, mindfulness, relaxation and aromatherapy services.
(3 min read)

9. Recommendations for management of positive monosomy X on cell-free DNA screening

Non-invasive prenatal testing using cell-free DNA (cfDNA) is currently offered to all pregnant women regardless of the fetal risk. In a study published in the American Journal of Obstetrics and Gynecology, researchers from Children’s National Hospital provided context and expert recommendations for maternal and fetal evaluation and management when cfDNA screening is positive for monosomy X or Turner Syndrome.
(2 min. read)

10. Innovation in clubfoot management using 3D anatomical mapping

While clubfoot is relatively common and the treatment is highly successful, the weekly visits required for Ponseti casting can be a significant burden on families. Researchers at Children’s National Hospital are looking for a way to relieve that burden with a new study that could eliminate the weekly visits with a series of 3D-printed casts that families can switch out at home.
(1 min. read)

11. Gender Self-Report seeks to capture the gender spectrum for broad research applications

A new validated self-report tool provides researchers with a way to characterize the gender of research participants beyond their binary designated sex at birth. The multi-dimensional Gender Self-Report, developed using a community-driven approach and then scientifically validated, was outlined in a peer-reviewed article in the American Psychologist, a journal of the American Psychological Association.
(2 min. read)

12. Cardiovascular and bone diseases in chronic kidney disease

In a study published by Advances in Chronic Kidney Disease, a team at Children’s National Hospital reviewed cardiovascular and bone diseases in chronic kidney disease and end-stage kidney disease patients with a focus on pediatric issues and concerns.
(1 min. read)

screenshot from Congenital Heart Initiative (CHI) Registry Participant Timeline

Congenital Heart Initiative beat recruitment goals, kicked off patient-engaged studies in year three

The Congenital Heart Initiative (CHI) is celebrating its third year as the first global patient-powered registry for adults with congenital heart disease (CHD). In 2023, the registry surpassed recruitment targets and launched a data intake process to allow researchers from around the world to submit proposals for patient-centered research and programs around the critical questions for adults with CHD who had their hearts repaired in childhood.

What it means

By recruiting over 4,600 participants in all 50 states and 37 countries, the CHI is now the largest patient-powered registry for adults with congenital heart disease. This is the first time researchers and clinicians have been able to access this type of robust data set to help them better understand and address the needs of people with CHD as they continue to age. Even better, the registry’s mechanisms allow for routine feedback and input about priorities directly from the growing patient population.

“Patient-centered research organizations, not providers or universities, have the greatest ability to lead this charge and lay the foundation for future breakthroughs. The inspiring efforts of all participants to date gives me hope that the next generation of advances is within reach,” says Matthew Lewis, M.D., an adult congenital heart specialist and CHI-RON site PI from Columbia University Medical Center.

An ongoing sub-study of CHI uses PCORnet®, the National Patient-Centered Clinical Research Network, to better understand how gaps in care impact the adult patient experience with CHD. The CHI-RON study (PCORI RD-2020C2-20347) fills in these gaps by exploring three distinct data types: patient-reported outcomes, health insurance claims and electronic health records. The effort is led by Children’s National Hospital and Louisiana Public Health Institute.

This year, CHI also launched some of its first studies, focused on pregnancy, health disparities and long-term health care follow-ups. The first academic manuscripts about these studies are expected to publish in the next year.

Why it matters

Although nearly 2 million adults in the United States are living with a congenital heart defect — more adults than children in fact — it’s been historically difficult to gather data on these conditions and to identify patient needs.

As children born with CHD become adults, they have a lot of worry and uncertainty about their limitations and abilities to achieve what might be considered common adult milestones. The research made possible by this registry and the mechanisms to communicate findings to both the participants and the larger clinical community will make a big difference in quality of life and hope to provide more answers to these important questions.

The CHI related meetings have allowed a space where patients and researchers can come together to discuss research priorities.

“Once you go and look at things from the patient’s point of view, there is no going back. It is going to be something that will redefine you as a researcher and a provider,” says Rohan D’Souza, M.D., a maternal-fetal medicine specialist who is an active participant in a PCORI-funded maternal health consortium focused on reducing maternal morbidity and mortality in CHD patients (PCORI EACB-23293).

The patient benefit

Additionally, because people with CHD live all over the United States and the world, it can be hard for them to connect with each other to share common questions and experiences with clinicians and each other. The patient-driven registry engages participants and hopes to help make greater connections between people who live with CHD. A key registry partner, the Adult Congenital Heart Association (ACHA), helps create opportunities, such as virtual Coffee Hours, for people in the registry to weigh in on research priorities and share feedback about CHI’s work.

“The ACHA Cafe was born out of a need for connection,” says Aliza Marlin, who founded and organized the café project on behalf of the ACHA. “A virtual social hour, coffee optional, gave the ACHD community a safe space to come together. Using it as a conduit to the Congenital Heart Initiative gave us an empowered voice in our own futures. It’s the perfect example of social connection leading to transformative possibilities.”

What’s next

Anitha John, M.D., medical director of the Washington Adult Congenital Heart Program and an adult congenital cardiologist at Children’s National Hospital who leads CHI, says that the future looks bright for the registry and the vital information it can provide.

The new data intake process launched this year, she adds, gives anyone with an interest the ability to submit ideas for new grants, projects and studies. The team will also continue to engage with registry participants, researchers and the centers who provide care for people with CHD, all with the goal of finding more answers to the key questions about how to accomplish specific goals, such as improving mental health, the health care transition and overall quality of life for adults with CHD. For more information on how to get involved, please email ACHDresearch@childrensnational.org.

boy in hospital bed

Local context, health system integrations key to sustainable interventions after RHD diagnosis

boy in hospital bed

Although entirely preventable, RHD, a disease of poverty and social disadvantage resulting in high morbidity and mortality, remains an ever-present burden in low- and middle-income countries, as well as rural, remote, marginalized and disenfranchised populations within high-income countries.

A rheumatic heart disease (RHD) work group convened by the National Heart, Lung, and Blood Institute (NHLBI) concludes that any priority intervention strategies to slow or stop late complications of RHD need to consider local contexts and should be integrated into health systems to meet the affected community’s needs in a sustainable way.

The group outlined priorities based on current available evidence to support the development and implementation of accessible, affordable and sustainable interventions in low-resource settings to manage RHD and its related complications.

Craig Sable, M.D., associate chief of Cardiology at Children’s National Hospital, served as a senior author on the recommendations, based on the work group findings.

Why it matters

Although entirely preventable, RHD, a disease of poverty and social disadvantage resulting in high morbidity and mortality, remains an ever-present burden in low- and middle-income countries, as well as rural, remote, marginalized and disenfranchised populations within high-income countries.

The NHLBI workshop sought to support RHD eradication efforts worldwide by:

  • Analyzing the current state of science
  • Identifying basic science and clinical research priorities

Each work group was assigned to review existing guidelines and research for different stages of the disease’s progression, which is now being published together as a set of five companion articles to raise the prioritization of RHD research and funding.

Moving the field forward

Due to the high prevalence of RHD in low- and middle-income countries, Dr. Sable’s work group focused on gaining a better understanding of the needs in the field from the five perspectives: people living with RHD, the community, healthcare providers, health systems and policymakers.

They identified several priorities and strategies, and they stressed that any interventional strategy, now or in the future, must be culturally safe and community-driven to ensure the creation of a locally and culturally relevant, sustainable continuum of care for people from historically marginalized populations.

What’s next

The authors emphasize that that over 300,000 deaths per year are the result of inadequate, underfunded and poorly integrated care. “Global vision and leadership to enact and implement available policies are needed to close large research gaps in all aspects at patient, health system and policy levels. Robust research and development are urgently needed to improve comprehensive tertiary care and ensure implementation of evidence-based interventions, while developing new innovations, technologies and interventions.”

You can read all the working group manuscripts, including this one: Tertiary Prevention and Treatment of Rheumatic Heart Disease: A National Heart, Lung, and Blood Institute Working Group Summary, in BMJ Global Health.

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:

doctor listening to child's heartbeat

Earlier detection of cardiometabolic risk factors for kids may be possible through next generation biomarkers

doctor listening to child's heartbeat

The next generation of cardiometabolic biomarkers should pave the way for earlier detection of risk factors for conditions such as obesity, diabetes and heart disease in children.

American Heart Association statement finds potential future measures, reiterates importance of heart-healthy lifestyle from birth through adulthood.

The next generation of cardiometabolic biomarkers should pave the way for earlier detection of risk factors for conditions such as obesity, diabetes and heart disease in children, according to a new scientific statement from the American Heart Association published in the journal Circulation.

“The rising number of children with major risk factors for cardiometabolic conditions represents a potential tsunami of preventable disease for our healthcare system,” says the statement’s lead author Michele Mietus-Snyder, M.D., a preventive cardiologist and clinical research scientist at Children’s National Hospital. “But by the time a child is identified based on today’s clinical biomarkers, it’s often too late to reverse the disease trajectory.”

The big picture

The scientific statement included biomarkers that met three criteria:

  • Early and precise clinical detection of metabolic abnormalities before a child begins to show the current clinical signs such as high body mass index (BMI), blood pressure or cholesterol.
  • Mechanistic intervention targets providing immediate risk measures and giving clinicians new targets to personalize and optimize interventions.
  • Modifiable biomarkers that are capable of tracking progression toward or away from cardiometabolic health.

The statement’s identified biomarkers included measures of:

  • Epigenetic, or environmental, factors
  • Gut microbiome health
  • Small particle metabolites in the body
  • Different types of lipids and their impacts on cell membranes
  • Inflammation and inflammatory mediators

The authors proposed these biomarkers with the goal of “expanding awareness to include a whole new realm of biomarkers that precede the traditional risk factors we currently rely upon, such as BMI, blood pressure, cholesterol and blood sugar,” says Mietus-Snyder. “Ideally, these new biomarkers will be added to the array of measures used in clinical research to better assess their value for earlier identification and prevention of global patterns of cardiometabolic health and risk.”

Why it matters

The next generation cardiometabolic biomarkers outlined by the authors are all currently used in research studies and would need to be validated for clinical use. However, Mietus-Snyder notes that the data already collected from these biomarkers in research can make a difference in clinical practice by enhancing our understanding of the deep metabolic roots for children at risk.

Evidence reviewed in the statement shows the risk factors children are exposed to, even before birth, can set the stage for cardiovascular and metabolic health across the lifespan.

Interestingly, all the different factors reviewed have been found to alter the functioning of the mitochondria — the complex organelles responsible for producing the energy for the body that every cell and organ system in turn needs to function. Every class of biomarkers reviewed is also favorably influenced by heart-healthy nutrition, a simple but powerful tool known to improve mitochondrial function.

What’s next

Even as the new so-called ‘omic’ biomarkers reviewed in this statement are developed for clinical applications, there are things clinicians can do to optimize them and improve mitochondrial function, according to Mietus-Snyder.

Most important is to strengthen the collective dedication of care providers to removing the barriers that prevent people, especially expecting mothers and children, from living heart-healthy lifestyles.

We have long known lifestyle factors influence health. Even as complicated metabolic reasons for this are worked out, families can reset their metabolism by decreasing sedentary time and increasing activity, getting better and screen-free sleep, and eating more real foods, especially vegetables, fruits and whole grains, rich in fiber and nutrients, with fewer added sugars, chemicals, preservatives and trans fats. Clinicians can work with their patients to set goals in these areas.

“We know diet and lifestyle are effective to some degree for everyone but terribly underutilized. As clinicians, we have compelling reasons to re-dedicate ourselves to advocating for healthy lifestyle interventions with the families we serve and finding ways to help them implement them as early as possible. The evidence shows the sooner we can intervene for cardiometabolic health, the better.”

child being evaluated for autism

Using a multisystem approach to improve access to autism care in Washington, D.C.

child being evaluated for autism

Children with autism face significant barriers to accessing evaluations and intervention services.

An article in the journal Pediatrics reviews the outcomes from a collective, targeted advocacy approach to improving access to autism supports and resources for children and their families in Washington, D.C. The effort was led by Children’s National Hospital and engaged a multidisciplinary team from within the hospital and across a wide range of community sectors.

What this means

Children’s National and DC Autism Parents worked collaboratively with a coalition of organizations from the broader District of Columbia community to address some of the biggest challenges and barriers that prevent autistic children and their families from receiving the resources and support they need in the nation’s capital.

Why it matters

Children with autism face significant barriers to accessing evaluations and intervention services often because of confusing referral processes, lack of centralized coordination across organizations serving children with autism, insurance coverage gaps, multiyear waitlists for diagnostic services and limited provider knowledge about autism. Racism and systemic inequities also persist in autism care across the United States.

Long and growing wait times in autism diagnostic clinics and lack of centralized care coordination for autistic children are prevalent across the District of Columbia, and as a result, many children and families in the region continue to lack access to the support they need.

What’s unique

The study describes multiyear efforts (2017–2022) to improve autism care throughout the District of Columbia using a collective impact framework to unite organizations from different sectors. This approach features the creation of a common agenda (including defining goals and priorities), shared measurement, mutually reinforcing activities, continuous communication and infrastructure support.

Together, the group members sought to address barriers and overcome challenges at multiple levels of the healthcare system at the same time by focusing advocacy in three specific areas:

  • Infrastructure-building initiatives/system-level approaches.
  • Population- and community-level services to build capacity and connect providers and families to needed resources.
  • Direct services that provide innovative, gap-filling supports to children and families as a stopgap until the necessary supports can be more sustainably provided across the board.

Bottom line

While more work is needed to continue expanding the availability of needed services, the findings from this initial effort can inform the next steps in Washington, D.C., and serve as a model for a collective framework approach for autism services in other parts of the United States.

You can read the full study “A Multisystem Approach to Improving Autism Care” in the journal Pediatrics.

More information and resources about these autism initiatives can be found at: