In October 2018, Children’s National hosted 20 neonatologists from 15 hospitals in China for a 10 day Quality Improvement Leadership Training Course focused on quality improvement principles and methodology. The course also featured presentations on hospital-wide quality improvement work and included speakers from the Quality & Safety Department, Nursing Quality, and the Neonatal Intensive Care Unit (NICU). The Performance Improvement team worked with the attendees on their own projects, such as reducing antibiotic use and increasing family-centered care in the NICU. The attendees then presented at the end of the course to their colleagues, as well as to five hospital presidents visiting from China.
The Children’s National Health System Center for Neuroscience and Behavioral Medicine is proud to host the 29th Annual Pediatric Neurology Update course.
This year’s course will focus on three critical areas in pediatric neuroscience and neurodevelopment: epilepsy with focuses on innovations in epilepsy surgery and new therapeutics; tuberous sclerosis including neurosurgical advances and transition to adulthood; and autism spectrum disorder with emphasis on new understandings and pre-requisites for an “Autism Friendly Hospital.”
We invite you to join us for presentations from renowned experts in the field in this full-day, CME accredited event on April 11, 2019 at the Bethesda North Marriott Hotel & Conference Center in Rockville, MD.
For more information and to register, visit ChildrensNational.org/NeurologyUpdate.
Rohan Kumthekar, M.D., a cardiology fellow working in Dr. Charles Berul’s bioengineering lab at the Sheikh Zayed Institute for Pediatric Surgical Innovation, part of Children’s National Health System, presented a prototype for a miniature pacemaker at the American Heart Association’s Scientific Sessions 2018 on Sunday, Nov. 11. The prototype, approximately 1 cc, the size of an almond, is designed to make pacemaker procedures for infants less invasive, less painful and more efficient, measured by shorter surgeries, faster recovery times and reduced medical costs.
Kumthekar, a Cardiovascular Disease in the Young Travel Award recipient, delivered his oral abstract, entitled “Minimally Invasive Percutaneous Epicardial Placement of a Custom Miniature Pacemaker with Leadlet under Direct Visualization,” as part of the Top Translational Science Abstracts in Pediatric Cardiology session.
“As cardiologists and pediatric surgeons, our goal is to put a child’s health and comfort first,” says Kumthekar. “Advancements in surgical fields are tending toward procedures that are less and less invasive. There are many laparoscopic surgeries in adults and children that used to be open surgeries, such as appendix and gall bladder removals. However, placing pacemaker leads on infants’ hearts has always been an open surgery. We are trying to bring those surgical advances into our field of pediatric cardiology to benefit our patients.”
Instead of using open-chest surgery, the current standard for implanting pacemakers in children, doctors could implant the tiny pacemakers by making a relatively tiny 1-cm incision just below the ribcage.
“The advantage is that the entire surgery is contained within a tiny 1-cm incision, which is what we find groundbreaking,” says Kumthekar.
With the help of a patented two-channel, self-anchoring access port previously developed by Berul’ s research group, the operator can insert a camera into the chest to directly visualize the entire procedure. They can then insert a sheath (narrow tube) through the second channel to access the pericardial sac, the plastic-like cover around the heart. The leadlet, the short extension of the miniature pacemaker, can be affixed onto the surface of the heart under direct visualization. The final step is to insert the pacemaker into the incision and close the skin, leaving a tiny scar instead of two large suture lines.
The median time from incision to implantation in this thoracoscopic surgery study was 21 minutes, and the entire procedure took less than an hour on average. In contrast, pediatric open-heart surgery could take up to several hours, depending on the child’s medical complexities.
“Placing a pacemaker in a small child is different than operating on an adult, due to their small chest cavity and narrow blood vessels,” says Kumthekar. “By eliminating the need to cut through the sternum or the ribs and fully open the chest to implant a pacemaker, the current model, we can cut down on surgical time and help alleviate pain.”
The miniature pacemakers and surgical approach may also work well for adult patients with limited vascular access, such as those born with congenital heart disease, or for patients who have had open-heart surgery or multiple previous cardiovascular procedures.
The miniature pacemakers passed a proof-of-concept simulation and the experimental model is now ready for a second phase of testing, which will analyze how the tailored devices hold up over time, prior to clinical testing and availability for infants.
“The concept of inserting a pacemaker with a 1-cm incision in less than an hour demonstrates the power of working with multidisciplinary research teams to quickly solve complex clinical challenges,” says Charles Berul, M.D., a guiding study author, electrophysiologist and the chief of cardiology at Children’s National.
Berul’s team from Children’s National collaborated with Medtronic PLC, developers of the first implantable pacemakers, to develop the prototype and provide resources and technical support to test the minimally-invasive surgery.
The National Institutes of Health provided a grant to Berul’s research team to develop the PeriPath, the all-in-one 1-cm access port, which cut down on the number of incisions by enabling the camera, needle, leadlet and pacemaker to be inserted into one port, through one tiny incision.
Other study authors listed on the abstract presented at Scientific Sessions 2018 include Justin Opfermann, M.S., Paige Mass, B.S., Jeffrey P. Moak, M.D., and Elizabeth Sherwin, M.D., from Children’s National, and Mark Marshall, M.S., and Teri Whitman, Ph.D., from Medtronic PLC.
Deepika Darbari, M.D., Andrew Campbell, M.D., and Steven Hardy, Ph.D., represented Children’s National at the Annual Sickle Cell Disease and Thalassemia (ASCAT) Conference in London in late October. The theme of this year’s conference was Sickle Cell Disease and Thalassemia: Bridging the Gap in Care and Research.
Dr. Darbari, a Children’s National hematologist, was the featured Grand Rounds speaker and led a pain management symposium. Dr. Darbari studies complications of sickle cell disease with an emphasis on pain. She conducts clinical and translational studies to better understand sickle cell pain and its management. She addressed the topics of pain mechanisms and phenotypes in sickle cell disease during her symposium.
Dr. Campbell, Director of the Comprehensive Sickle Cell Disease Program at Children’s National, has served on the steering committee for this annual international conference for the past two years, working alongside colleagues from across the globe to bring together multiple experts who work with children with blood disorders. Dr. Campbell remarks, “I’m pleased to promote and be a part of [this conference] because it’s one of the best sickle cell/thalassemia conferences in the world pushing the field forward with international representation.” He spoke at the conference during Dr. Darbari’s symposium, discussing sickle cell disease pain around the globe.
Dr. Hardy, a pediatric psychologist in the divisions of Blood and Marrow Transplant, Blood Disorders (Hematology) and Oncology and the Center for Cancer and Blood Disorders at Children’s National, also presented at the conference on his abstract “Computerized Working Memory Training Improves Cognition in Youth with Sickle Cell Disease.” His abstract received the Best Oral Abstract Award at the conference and was awarded a 500 pound prize. In his work at Children’s National, Dr. Hardy provides evidence-based psychological assessments and treatments for children with cancer, sickle cell disease and other blood disorders, as well as those patients undergoing bone marrow transplants.
Poster presentations were also given by Barbara Speller Brown, NP, DNP, Lisa Thaniel, MSW, Ph.D., Brittany Moffitt, MSW, and Stefanie Margulies, senior clinical research coordinator, all representing Children’s National at the ASCAT Conference.
Over 40 experts involved in the study and treatment of diffuse intrinsic pontine gliomas (DIPG) convened at the inaugural DIPG Round Table Discussion at Children’s National Health System Sept. 30-Oct. 2.
Spearheaded by Javad Nazarian, Ph.D., MSC, Scientific Director of the Children’s National Brain Tumor Institute, the focused DIPG Round Table Discussion brought investigators, neurosurgeons and clinicians from North America, Europe and Australia to Children’s National in Washington, D.C., to engage in dialogue and learn about the changing landscape of DIPG tumor biology and therapeutics. Attendees discussed the recent discoveries in DIPG research, precision medicine, preclinical modeling, immunotherapy, data sharing and the design of next generation clinical trials.
Families affected by DIPG also had an opportunity to participate in day 2 of the event. Many voiced the necessity of data sharing to ensure progress in the field. Dr. Nazarian seconded that point of view: “It is critical to get raw data and have it harmonized and integrated so that the end users (researchers) can utilize and do cross-data analysis…We need to break down the silos.” The highlight of the data sharing session was the Open DIPG Initiative that is spearheaded by Dr. Nazarian and the Children’s Brian Tumor Tissue Consortium (CBTTC).
As recent technological and molecular advances in DIPG biology have pushed the field forward, focus groups have become essential to share data, ideas and resources with the overarching goal of expediting effective treatments for children diagnosed with DIPG. An extremely aggressive form of pediatric brain cancer, DIPG accounts for roughly 10 to 15 percent of all brain tumors in children. Between 300 and 400 children in the United States are diagnosed with DIPG each year, but the 5-year survival for the brain tumor is less than 5 percent, a strikingly low number in comparison with other types of childhood cancer. DIPG research and clinical initiatives have changed in the past years mainly due to the generous support of families for basic research. The DIPG Open Table meeting was designed to coalesce a team of experts to expedite the first crack at curing this devastating childhood cancer.
Pediatric advance care planning (pACP) and making complex medical decisions is especially difficult for parents of children with extremely rare diseases. Imagine if your child is the only person in the world with a rare disease that may limit basic functions: eating, breathing, walking and talking. Now, imagine you are presented with two scenarios: Experiment with a new drug to see if it improves your child’s conditions or plan for near-future, end-of-life care.
While these types of difficult decisions for parents of children with rare diseases are common, a new counseling model, based on a four-session pilot program conducted at Children’s National, aims to ease this process by providing parents with a comprehensive support plan.
On Oct. 15 and 16, Maureen Lyon, Ph.D., a clinical psychologist at Children’s National and a professor of pediatrics at the George Washington University School of Medicine and Health Sciences, will present “Living on the Precipice: The Journey of Children with Rare Diseases and Their Families” at a poster session at the National Organization for Rare Disorders’ Rare Disease and Orphan Products Breakthrough Summit at the Marriott Wardman Park in Washington.
Dr. Lyon will highlight key take-home points she observed during the pilot program:
- Background: Eight families were recruited for the pilot program and seven enrolled. Six completed the four-session program, which was spread out over two months.
- All parents were mothers, but two fathers joined for the goal-planning care conversation sessions. Some families brought their children to visits.
- Five parents were married and two were single.
- Four families identified as Caucasian, three families identified as African American, and one family identified as American Indian or Alaska Native.
- Visits: About half of the families – three – attended the sessions at Children’s National. Four used the telemedicine option. A research nurse, clinical psychologist and advanced practice nurse participated in the 60- to 90-minute sessions.
- Plans: The families discussed basic palliative care needs, such as comprehensive care coordination, which is highly individualized, before discussing their goals of care. After their needs and goals were discussed, the families created advance care plans to guide them during a medical crisis.
- Results: Out of the six parents who completed the study, the mean positive caregiver appraisal score increased from 4.5. To 4.7, mean family well-being increased from 3.9 to 4.1, and the mean score for meaning and peace increased from 21.4 to 23.3. The scores were calculated by using the Carer Support Needs Assessment Tool (CSNAT) during the assessment and with modified protocols to assess quality of life and caregiver appraisal after the intervention.
“These sessions increased a family’s sense of overall well-being,” says Jessica Thompkins, B.S.N., R.N., C.P.N., a research nurse coordinator with the FAmily CEntered Advanced Care Planning Team (FACE) and a co-author of the poster. “The families felt better just by knowing that they had time scheduled each week to connect with a trained medical provider to discuss a range for options they need as a caregiver, from everyday care at home to long-term health care planning at the hospital.”
The top-rated support need identified by all parents, according to the survey: “Knowing what to expect in the future when caring for their children.”
“The goal of palliative care is to optimize quality of life for children with life-threatening illnesses and their families by anticipating, preventing and treating suffering in all its forms,” says Dr. Lyon. “This is delivered throughout illness and addresses physical, intellectual, emotional, social and spiritual needs.”
The researchers would like to use this pilot to partner with other medical centers to create an evidence-based template to support the palliative care needs of family caregivers who have children with life-limiting rare diseases. Their goal is to improve a family caregiver’s quality of life, over time, and increase the completion and documentation of advance care plans for children of all ethnic and racial groups.
Rare diseases are defined as a disease that affects fewer than 200,000 people in the U.S. Extremely rare diseases, including those observed in this pilot, may affect just one or a few people in the world.
The rare disease pilot program is based on previous pACP models with adolescent HIV and pediatric cancer populations.
Additional poster authors include Jichuan Wang, Ph.D., Karen Fratantoni, M.D., M.P.H., Kate Detwiler, Ph.D., Yao Cheng, M.S., and Marshall Summar, M.D.
Pediatric nephrology is a relatively small specialty worldwide, encompassing just a few hundred doctors in the U.S. For each allied health field that provides collaborative care with these physicians – including nutrition, child-life, psychology and social work – the numbers of providers are even smaller. There are no national meetings for these individual subspecialty fields and no venues to meet new like-minded colleagues or learn about new research or protocols.
Six years ago, the American Society of Pediatric Nephrology (ASPN) aimed to help resolve this dilemma by launching a new multidisciplinary symposium that brings together allied health professionals of all kinds within pediatric nephrology.
Each year, the “ASPN Multidisciplinary Symposium” changes locations, allowing the meeting to target different regional groups of allied health professionals based on geography. With the meeting in Washington this year, Children’s National Health System will be the local host, a distinct honor for an academic medical center that treats hundreds of nephrology patients each year, says pediatric Nephrologist Asha Moudgil, M.D., who directs Children’s kidney transplant service.
There are multiple advantages to having the symposium in Washington, Dr. Moudgil explains. One is access to Children’s experts in this field, who have a wealth of experience in managing issues that affect patients who live in the greater Washington area. For example, the keynote address scheduled for the meeting’s opening night will be delivered by Jennifer Verbesey, M.D., Children’s surgical director of pediatric kidney transplantation, focusing on living donation in minority populations. Living kidney donors and recipients who are minorities have unique issues that can affect organ longevity, explains Dr. Moudgil, which may not be well known by all clinicians.
Children’s speakers also focus prominently in the main session on the second day, including:
- Angela Boadu, RD, LDN/LD, a registered dietitian, and Kaushalendra Amatya, Ph.D., a psychologist, are giving a talk about nutrition and the psychosocial aspects of obesity
- Surgeon Evan Nadler, M.D., director of Children’s Bariatric Surgery Program, is speaking about bariatric surgery before and after transplantation
- Nurse Practitioner Christy Petyak, CPNP-PC, and Social Worker Heidi Colbert, LICSW, CCTSW, NSW-C, are leading breakout sessions about the practical aspects of immunosuppressive therapy and resources for uninsured patients
- Amatya, the Children’s psychologist, also is leading a breakout session on internalizing psychological disorders in pediatric renal patients and
- Registered Dietitian Kristen Sgambat, Ph.D., RD, and Dr. Moudgil are co-leading a breakout session on nutritional challenges and enteral supplementation in chronic kidney disease.
Another advantage to holding the meeting in the nation’s capital is its close proximity to government research and federal regulatory agencies, such as the Food and Drug Administration (FDA) and the National Institutes of Health (NIH). Speakers from both agencies will be present, talking about how the FDA approves medicines for pediatric patients and offering details about the NIH’s rare disease program.
Besides the abundance of more formal knowledge-sharing, Dr. Moudgil adds, there will be plenty of opportunities for attendees to network, making connections within and outside their own respective fields.
“This is a platform for making long-term professional relationships,” Dr. Moudgil says. “Even if you’re the sole clinician representing your specialty at your own institution, you’ll be able to connect with other specialists at institutions across the country. You’re not only acquiring new information, you’re acquiring a group of colleagues you can connect with this year and those professional relationships can extend far into the future.”
A quality-improvement project to standardize feeding practices for micro preemies – preterm infants born months before their due date – helped to boost their weight and nearly quadrupled the frequency of lactation consultations ordered in the neonatal intensive care unit (NICU), a multidisciplinary team from Children’s National Health System finds.
According to the Centers for Disease Control and Prevention, about 1 in 10 infants in 2016 was preterm, born prior to completing 37 gestational weeks of pregnancy. Micro preemies are the tiniest infants in that group, weighing less than 1,500 grams and born well before their brain, lungs and organs like the liver are fully developed.
As staff reviewed charts for very low birth weight preterm infants admitted to Children’s NICU, they found dramatic variation in nutritional practices among clinicians and a mean decline in delta weight Z-scores, a more sensitive way to monitor infants’ weight gain along growth percentiles for their gestational age. A multidisciplinary team that included dietitians, nurses, neonatologists, a lactation consultant and a quality-improvement leader evaluated nutrition practices and determined key drivers for improving nutrition status.
“We tested a variety of strategies, including standardizing feeding practices; maximizing intended delivery of feeds; tracking adequacy of calorie, protein and micronutrient intake; and maximizing use of the mother’s own breast milk,” says Michelande Ridoré, MS, a Children’s NICU quality-improvement lead who will present the group’s findings during the Virginia Neonatal Nutrition Association conference this fall. “We took nothing for granted: We reeducated everyone in the NICU about the importance of the standardized feeding protocol. We shared information about whether infants were attaining growth targets during daily rounds. And we used an infographic to help nursing moms increase the available supply of breastmilk,” Ridoré says.
On top of other challenges, very low birth weight preterm infants are born very lean, with minimal muscle. During the third trimester, pregnant women pass on a host of essential nutrients and proteins to help satisfy the needs of the fetus’ developing muscles, bones and brain. “Because preterm infants miss out on that period in utero, we add fortification to provide preemies with extra protein, phosphorus, calcium and zinc they otherwise would have received from mom in the womb,” says Victoria Catalano, RDN, LD, CNSC, CLC, a pediatric clinical dietitian in Children’s NICU and study co-author. Babies’ linear growth is closely related to neurocognitive development, Catalano says. A dedicated R.N. is assigned to length boards for Children’s highest-risk newborns to ensure consistency in measurements.
Infants who were admitted within the first seven days of life and weighed less than 1,500 grams were included in the study. At the beginning of the quality-improvement project, the infants’ mean delta Z-score for weight was -1.8. By December 2018, that had improved to -1.3. And the number of lactation consultation ordered weekly increased from 1.1 to four.
“We saw marked improvement in micro preemies’ nutritional status as we reduced the degree of variation in nutrition practices,” says Mary Revenis, M.D., NICU medical lead on nutrition and senior author for the research. “Our goal was to increase mean delta Z-scores even more. To that end, we will continue to test other key drivers for improved weight gain, including zinc supplementation, updating infants’ growth trajectories in the electronic medical record and advocating for expanded use of birth mothers’ breast milk,” Dr. Revenis says.
In addition to Ridoré, Catalano and Dr. Revenis, study co-authors include Caitlin Forsythe MS, BSN, RNC-NIC, lead author; Rebecca Vander Veer RD, LD, CNSC, CLC, pediatric dietitian specialist; Erin Fauer RDN, LD, CNSC, CLC, pediatric dietitian specialist; Judith Campbell, RN, IBCLC, NICU lactation consultant; Eresha Bluth MHA; Anna Penn M.D., Ph.D., neonatalogist; and Lamia Soghier M.D., Med., NICU medical unit director.
For more than three decades, the world’s pre-eminent scientists and clinicians in pediatric neuro-oncology have convened the International Symposium on Pediatric Neuro-oncology every two years. Their goal is to advance the care and treatment of pediatric brain and central nervous system tumors by connecting across disciplines to share research findings and discuss the latest treatment approaches.
This year for the first time, representatives from parent advocacy groups and patient support foundations were also invited to attend the traditionally scientific meeting. Their inclusion allowed care providers and scientific investigators to make sure the voices of patients and families, and their needs, are heard.
Roger J. Packer, M.D., senior vice president of the Center for Neuroscience and Behavioral Medicine at Children’s National Health System, served as international organizing committee chair this year. He was chair and organizer of the very first symposium, held in 1986, and has led additional sessions over the years.
Dr. Packer had the honor of giving the opening keynote address to more than 1,200 participants in Denver this year. He used his lecture to highlight some of the amazing knowledge leaps made in the last decade in understanding the molecular makeup and genetics behind brain and spinal cord tumors.
“We’ve made more discoveries in these areas in the last 10 years than we made in the 50 years before that. It’s been a phenomenal decade for discovery,” he notes. “But the fact remains we have not yet been able to translate all of this knowledge into more effective therapies for most children with brain and central nervous system cord tumors.”
Dr. Packer says progress made in managing and treating childhood low grade gliomas is one example of how care should move forward for other tumor types. The unique genetic and molecular makeup of low grade gliomas, which are the single most common form of childhood low grade tumor, has allowed clinicians to begin moving away from surgeries, radiation therapy and chemotherapy toward less neurotoxic treatments targeted at the specific molecular properties of the tumor itself.
“Although the chemotherapy protocol we began for low-grade gliomas 30 years ago works well and is still the standard of care today, the new molecular approaches we and others have tested will hopefully replace it soon and result in even better outcomes,” he adds.
Medulloblastoma, the most common form of malignant brain tumor, is one area Dr. Packer notes could stand to benefit from therapies with less impact on a child’s quality of life. The current treatment protocol used for this childhood tumor also remains the same as the one that Dr. Packer helped develop more than 30 years ago.
“Our protocol is effective, and we’ve moved survival from 50 percent to 80 percent for these types of tumors using this approach, but it’s time to determine how best to move toward effective molecularly targeted therapies that would allow us to reduce the neurotoxic treatments necessary to treat these tumors.”
“We have to move from our decade of discovery to a decade of no excuses where we are able to use what we’ve learned to improve the care of all childhood brain and spinal cord tumors,” he says.
Dr. Packer says the key is to avoid getting paralyzed by the mountain of molecular data that is available and really focus on the specific information needed to make treatments more precise.
One promising new approach is the use of immunotherapy for pediatric brain and spinal cord tumors. Children’s National and colleagues from across the U.S. are at the forefront of developing these therapies to control tumor growth, and presented several related studies at ISPNO:
- Eugene Hwang, M.D. presented the findings from immunotherapy clinical trials for brain and central nervous system tumors, including diffuse intrinsic pontine glioma (DIPG).
- Karin Walsh, Psy.D., shared new data demonstrating the reduced neurotoxicity of a new molecularly targeted agent.
There were also several poster session presentations where Dr. Hwang, Lindsey Kilburn, M.D., Brian Rood, M.D., and others from the Children’s National team shared findings related to the potential and the challenges of molecular targeted therapies, especially immunotherapies. The team at Children’s also presented data related to new findings about how to reverse neurologic and neurocognitive deficits that often result from these conditions, including some that for years were thought to be irreversible, such as vision deficits.
Dr. Packer notes that many of the newest clinical trials both in the U.S. and internationally have the potential to kick start this decade of “no excuses.”
“We’ve made great progress, but we haven’t yet been able to take full advantage of the knowledge we’ve amassed. To do it, we all have to work together as a community nationally and internationally to change the paradigms of how we treat these children and make meaningful advances.”
On July 22, 2018, more than 700 cardiac specialists met in Orlando, Fla. for the Sixth Scientific Meeting of the World Society for Pediatric and Congenital Heart Surgery (WSPCHS 2018).
The five-day conference hosted a mix of specialists, ranging from cardiothoracic surgeons, cardiologists and cardiac intensivists, to anesthesiologists, physician assistants and nurse practitioners, representing 49 countries and six continents.
To advance the vision of WSPCHS – that every child born with a congenital heart defect should have access to appropriate medical and surgical care – the conference was divided into eight tracks: cardiac surgery, cardiology, anesthesia, critical care, nursing, perfusion, administration and training.
Richard Jonas, M.D., outgoing president of WSPCHS and the division chief of cardiac surgery at Children’s National Health System, provided the outgoing presidential address, delivered the keynote lecture on Transposition of the Great Arteries (TGA) and guided a surgical skills lab with printed 3-D heart models.
Other speakers from Children’s National include:
- Gil Wernovsky, M.D., a cardiac critical care specialist, presented on the complex physiology of TGA, as well as long-term consequences in survivors of neonatal heart surgery, including TGA and single ventricle.
- Mary Donofrio, M.D., a cardiologist and director of the Fetal Heart Program, presented “Prenatal Diagnosis: Improving Accuracy and Planning Delivery for babies with TGA,” “Systemic Venous Abnormalities in the Fetus,” “Intervention for Fetal Lesions Causing High Output Heart Failure” and “Fetal Cardiac Care – Can We Improve Outcomes by Altering the Natural History of Disease?”
- Gerard Martin, M.D., a cardiologist and medical director of global services, presented “Is the Arterial Switch as Good as We Thought It Would Be?” and “Impact, MAPIT, NCPQIC – How and Why We Should All Embrace Quality Metrics.”
- Pranava Sinha, M.D., a cardiac surgeon, presented the abstract “Cryopreserved Valved Femoral Vein Homografts for Right Ventricular Outflow Tract Reconstruction in Infants.”
Participants left with knowledge about how to diagnose and treat complex congenital heart disease, and an understanding of the long-term consequences of surgical management into adulthood. In addition, they received training regarding standardized practice models, new strategies in telemedicine and collaborative, multi-institutional research.
“It was an amazing experience for me to bring my expertise to a conference which historically concentrated on surgical and interventional care and long-term follow-up,” says Dr. Donofrio. “The collaboration between the fetal and postnatal care teams including surgeons, interventionalists and intensive care doctors enables new strategies to be developed to care for babies with CHD before birth. Our hope is that by intervening when possible in utero and by planning for specialized care in the delivery room, we can improve outcomes for our most complex patients”.
The Johns Hopkins University School of Medicine, Florida Board of Nursing, American Academy of Nurse Practitioners National Certification Program, American Nurses Credentialing Center and the American Board of Cardiovascular Perfusion provided continuing medical credits for eligible providers.
“I was so proud to be a member of the Children’s National team at this international conference,” notes Dr. Wernovsky. “We had to the opportunity to share our experience in fetal cardiology, outpatient cardiology, cardiac critical care, cardiac nursing and cardiac surgery with a worldwide audience, including surgical trainees, senior cardiovascular surgeons and the rest of the team members necessary to optimally care for babies and children with complex CHD. In addition, members of the nursing staff shared their research about advancements in the field. It was quite a success – both for our team and for all of the participants.”
On June 10, 2018, some of the brightest minds in the field gathered at the 2018 Washington DC Gluten-Free Education Day and Expo to discuss opportunities and challenges associated with living a gluten-free life.
The one-day expo focused on how the food we eat affects our brains, how to dispel gluten-free myths and how to think outside the box with new recipes and cooking demonstrations from local restaurants, bakeries and chefs.
Keynote speakers for this year’s symposium included Benny Kerzner, M.D., medical director, Celiac Disease Program at Children’s National, Jocelyn Silvester, M.D., director of Research, Celiac Disease Program at Boston Children’s Hospital and Ian Liebowitz, M.D. from Pediatric Specialists of Virginia.
Additionally, Edwin Liu, M.D., from Colorado Children’s Hospital and Ilana Kahn, M.D., from Children’s National gave a joint keynote on the autoimmune connection, focusing on conditions related to celiac disease and the gut-brain connection.
Teen mentors gave a panel discussion for the 13+ age group attending the conference in a session called “For Teens from Teens!” during which they discussed the challenges of navigating a gluten-free lifestyle as a teen.
In addition to the useful educational sessions, attendees visited many of the 57 vendor tables with gluten-free product samples voting for the best sweet and savory winners.
The Celiac Disease Program at Children’s National Health System started in 2009 to improve the way pediatric celiac disease is diagnosed and treated. Working in partnership with concerned members of our community, our Celiac Disease Program brings together a team of expert physicians, nurses, nutritional consultants and professional counselors dedicated to developing a national model for detecting and treating celiac disease in children.
The Child Health Advocacy Institute at Children’s National Health System held its first School Health Symposium, designed to strengthen relationships between the education and health care sectors. Led by Tonya Vidal Kinlow, M.P.A., vice president of Community Engagement, Advocacy and Community, Children’s National welcomed more than 150 regional health and education partners, community members and Children’s National staff to support the mission of helping kids grow up stronger.
In a day of panel discussions and breakout sessions, education, government and health professionals tackled the many societal challenges children face. The panel discussions at this year’s symposium focused on the following topics:
- Caring for the whole child using a trauma-informed approach
- Children’s National regional school-based programs
- Local government role in school health
- How a health system advocates for school health
- How organizations are working with schools to address the social determinants of health
Participants also had the option to attend one of the following breakout sessions:
- Mental wellness & self-care for school and health care professionals
- School-based research: engaging families, empowering students
- How an anchor institution is addressing the social determinants of health
- School health legislation update
Outreach programs focused on strong community partnerships were recognized for serving diverse communities including infants and their caregivers, primary care clinicians, high school students, child care providers and teachers. Three programs were chosen as recipients for the Community Health Improvement Award through an application process where a panel of judges with expertise in public health and policy evaluated against an established criteria set.
“Our Community Health Improvement Awards recognize all efforts to conduct community outreach programs and shape public policies that benefit children and families in the Washington D.C. area,” says Kurt Newman, M.D., president and CEO of Children’s National. “The award also recognizes the physicians and clinicians here at Children’s who go above and beyond to provide quality care to kids and their families.”
This year’s recipients actively play a role in contributing to school health:
- Early Childhood Innovation Network led by Lee Beers, M.D., Medical Director for Municipal and Regional Affairs, Child Health Advocacy Institute
- Improving Pediatric Asthma Care in the District of Columbia (IMPACT DC) led by Stephen Teach, M.D., M.P.H., chair of the Department of Pediatrics at Children’s National
- DC School Based Health Centers led by Lawrence D’Angelo, M.D., M.P.H. and Kathy Woodward-Murray, M.D., adolescent medicine specialists
The School Health Symposium was followed by a networking reception to allow participants an opportunity to connect with colleagues and discuss the sessions.
Rebecca Zee, a Children’s urology fellow, was awarded the best basic science prize at the Societies for Pediatric Urology annual meeting for her abstract describing a novel treatment to prevent ischemia reperfusion injury following testicular torsion.
Occurring in 1 in 4,000 males, testicular torsion occurs when the testis twists along the spermatic cord, limiting blood supply to the testicle. Despite prompt surgical intervention and restoration of blood flow, up to 40 percent of patients experience testicular atrophy due to a secondary inflammatory response, or ischemia reperfusion injury. Cytisine, a nicotine analog that the Food and Drug Administration approved for smoking cessation, recently has been found to activate a novel anti-inflammatory cascade, limiting the post-reperfusion inflammatory response.
“Administration of cytisine was recently found to limit inflammation and preserve renal function following warm renal ischemia,” Zee says. “We hypothesized that cytisine would similarly prevent ischemia reperfusion injury and limit testicular atrophy following testicular torsion.”
Using an established experimental model, Zee and colleagues induced unilateral testicular torsion by anesthetizing the adult male experimental models and rotating their right testicles by 720 degrees for two hours. In the treatment arm, the preclinical models were given cytisine as a 1.5 mg/kg injection one hour before or one hour after creating the testicular torsion. Eighteen hours after blood flow was restored to the right testis, total leukocyte infiltration and inflammatory gene expression were evaluated. Thirty days later, the researchers measured testicular weight and evaluated pro-fibrotic genes.
“We found that the administration of cytisine significantly decreases long-term testicular atrophy and fibrosis following testicular torsion,” says Daniel Casella, M.D., a urologist at Children’s National Health System and the study’s senior author. “What is particularly exciting is that we found similar long-term outcomes in the group that was given cytisine one hour after the creation of testicular torsion. This scenario is much more clinically applicable, given that we would not be able to treat patients until they present with testicular pain,” Dr. Casella adds.
Additional research is needed to determine the optimal cytisine dosing and administration regimen, however the researchers are hopeful that they can transition their findings to a pilot clinical trial in the near future.
In addition to Zee and Dr. Casella, the multi-institutional team included Children’s co-authors Nazanin Omidi, Christopher Bayne, Michael Hsieh, M.D., and Evaristus Mbanefo, in addition to Elina Mukherjee and Sunder Sims-Lucas, Ph.D., from the University of Pittsburgh.
Financial support for this work was provided by the Joseph E. Robert Jr. Center for Surgical Care.
“We know how critical it is to identify and appropriately treat every concussion, particularly when they happen early in an athlete’s career,” Children’s National President and CEO Kurt Newman, M.D., told a crowd of nearly 300 sports concussion experts gathered in Washington, D.C. for the Sports Neuropsychology Society’s (SNS) 6th Annual Concussion Symposium.
Children’s National served as a title sponsor of the conference, which serves as the annual meeting for SNS. Each year, members from around the world meet to share best practices in sports-related concussion management through presentation of evidence-based studies on a wide range of related topics. This year’s presentations included topics such as:
- Sex differences in sport-related concussion: Incidence, outcomes and recovery
- Concussion Clinical Profiles and Targeted Treatments: Building the Evidence
- Legislative advocacy and the sports neuropsychologist
- Treatment of concussion in kids: What we know, what we think we know, and what we need to learn
“This meeting and its agenda, held in D.C. where we’ve done so much work on understanding concussion management for children, is particularly meaningful for me because it really drives home our key message of a link between active participation in sports, appropriate recognition, management of youth concussions and the developing athlete’s brain health,” says Gerard Gioia, Ph.D., division chief of neuropsychology and director of the Safe Concussion Outcome, Recovery and Education (SCORE) program at Children’s National.
Dr. Gioia, an internationally recognized expert in pediatric concussion management, was named president of the society at the conclusion of this year’s meeting, which was held in Washington, D.C. from May 3-5, 2018. During his two year term, he will work with members to advance the mission of SNS, which seeks to advance the field of neuropsychology to generate and disseminate knowledge regarding brain-behavior relationships as it applies to sports, and to promote the welfare of athletes at all levels.
“The way we can really help our youth athletes is by understanding how we can maximally prevent concussions in sports, and how we can manage those earliest concussions more effectively to minimize the negative long term consequences,” says Dr. Gioia.
Dorothy Bulas, M.D. F.A.C.R., F.A.I.U.M., F.S.R.U., chief of diagnostic imaging and radiology in the Division of Diagnostic Imaging and Radiology at Children’s National Health System, is being recognized at the 2018 Society for Pediatric Radiology Annual Meeting with their most distinguished honor, the Gold Medal.
The Society of Pediatric Radiology (SPR) Gold Medal is awarded to pediatric radiologists who have contributed greatly to the SPR and their subspecialty of pediatric radiology as a scientist, teacher, personal mentor and leader.
Initially, Dr. Bulas completed her residency in pediatrics. During a pediatric radiology rotation at John Hopkins University, she realized how much she loved problem solving and using emerging imaging modalities and went on to complete her radiology residency at Albert Einstein Hospital. Soon after, Dr. Bulas moved to Washington, D.C. to complete a pediatric radiology fellowship at her professional home, Children’s National.
Since the completion of her fellowship, Dr. Bulas views her role in the advancement of fetal imaging as her most significant professional contribution. She has published 131 papers, one of her most recent as a co-author on “Neuroimaging findings in normocephalic infants with Zika virus” in Pediatric Neurology. Dr. Bulas is also a co-author of the textbook entitled Fundamental and Advanced Fetal Imaging and has authored 35 book chapters.
She has served as program director of the Radiology Fellowship Program at Children’s National since 2005 where she has impacted medical students, residents and fellows from the United States and abroad.
As a previous chair member for numerous organizations, Dr. Bulas currently co-chairs the American College of Radiology’s pediatric radiology education committee. She is a founding member of the Image Gently Alliance, where she chaired the outreach campaign to parents and wrote brochures, web material and articles. Dr. Bulas is also a founder of the World Federation of Pediatric Imaging.
Dr. Bulas was honored as an outstanding teacher with the Edward Singleton-Hooshang Taybi Award for Excellence in Education from the SPR and this past fall and as the Outstanding Educator in 2017 by the Radiological Society of North America.
The Children’s National Community Health Track (CHT) has been recognized by the Academic Pediatric Association with its prestigious Teaching Program Award. The honor was made public at the Pediatric Academic Societies (PAS) annual meeting on May 7, 2018 in Toronto, Ontario. The purpose of the award is to foster interest in the teaching of general pediatrics by giving national recognition to an outstanding general pediatric program. The PAS selection committee chose Children’s CHT for demonstrating excellence in educational teaching methods, acceptance by the community, its adaptability and the outstanding quality of residents trained in the program.
“As a community-focused health system, one of our central missions is to train a new generation of residents to create successful community partnerships and integrate public health concepts into the everyday practice of medicine to improve the health of underserved communities,” says Cara Lichtenstein, M.D., MPH and director of Children’s Community Health Track.
Children’s CHT focuses on underserved populations and the development of skills in health policy, advocacy and community healthcare delivery. Residents spend their outpatient time learning to use public health techniques to identify and address community health needs, becoming a physician advocate and learning more about the sociocultural determinants of health and health disparities. Training for CHT is integrated with Children’s overall pediatrics residency program to ensure excellence in attainment of clinical skills, and to allow residents the opportunity to work with Children’s top-rated primary care, specialty and hospital-based physicians and care teams.
This is the third time in recent years that Children’s National has been honored by the Academic Pediatric Association. In 2013, Mary Ottolini, M.D., MPH and vice chair of medical education was recognized for her leadership of Children’s Master Teacher Leadership Development program. In 2009, Denice Cora-Bramble, M.D., MBA accepted the APA Health Care Delivery Award for the Goldberg Center for Community Pediatric Health at Children’s National.
Children’s offers up to eight residency positions each year designated as Community Health Track positions. The goals of the track are centered on the core competencies of community pediatrics as described by the American Academy of Pediatrics. Primarily to train residents to:
- Grasp the breadth of diversity inherent in the pediatric population and be familiar with health-related implications of cultural beliefs and practices of groups represented in the community.
- Recognize the role of the pediatrician in identifying needs and facilitating access to resources for patients, families and communities.
- Be aware of the risks to health and barriers to care for underserved children in Washington, D.C., and demonstrate skill in improving access to continuous comprehensive health maintenance.
- Appreciate key issues related to the pediatrician’s role and interactions with local community agencies and advocacy groups.
- Value the role of schools and childcare settings in supporting the educational and psychosocial development of children and adolescents.
- Apply key principles about health promotion and disease prevention for children and adolescents over a set period of time.
- Observe, interpret and report observations about the communities in which they serve.
The fundamental difference in this track compared to the more traditional Categorical Track lies in the outpatient experiences that occur in all three years of training. The CHT utilizes these outpatient experiences to help residents to attain a well-rounded community pediatrics experience.
“Washington, D.C. is an incredibly diverse community with large numbers of vulnerable children and families from D.C. and all over the world. Given our location in our nation’s capital, residents and faculty have the unique opportunity to work with national professional and advocacy organizations that are influencing policy – both locally and nationally – as it relates to children, families and health care,” says Mark Weissman, M.D., chief of general pediatrics and community health at Children’s National. “We’re thrilled to be recognized with the Academic Pediatric Association’s Teaching Program Award and grateful to Dr. Lichtenstein for her leadership and commitment to improving the health of D.C.’s children and training the next generation of pediatricians and advocates.”
Catherine “Katie” Forster, M.D., M.S., and Nathan Anthony Smith, Ph.D., received the President’s Award for Innovation in Research honoring their respective research efforts to explore an understudied part of the microbiome and to shed light on an underappreciated player in nerve cell communication.
Drs. Forster and Smith received their awards April 19, 2018, the penultimate day of Research and Education Week 2018, an annual celebration of the excellence in research, education, innovation and scholarship that takes place at Children’s National Health System. This year marks the fifth time the President’s Award honor has been bestowed to Children’s faculty.
Dr. Forster’s work focuses on preventing pediatric urinary tract infections (UTIs). Frequently, children diagnosed with illnesses like spina bifida have difficulty urinating on their own, and they often develop UTIs. These repeated infections are frequently treated with antibiotics which, in turn, can lead to the child developing antibiotic-resistant organisms.
“The majority of the time if you culture these children, you’ll grow something. In a healthy child, that culture would indicate a UTI,” Dr. Forster says. “Children with neurogenic bladder, however, may test positive for bacteria that simply look suspect but are not causing infection. Ultimately, we’re looking for better ways to diagnose UTI at the point of care to better personalize antibiotic treatment and limit prescriptions for children who do not truly need them.”
Powered by new sequencing techniques, a research group that includes Dr. Forster discovered that the human bladder hosts a significant microbiome, a diverse bacterial community unique to the bladder. Dr. Forster’s research will continue to characterize that microbiome to determine how that bacterial community evolves over time and whether those changes are predictable enough to intervene and prevent UTIs.
“Which genes are upregulated in Escherichia coli and the epithelium, and which genes are upregulated by both in response to each other? That can help us understand whether genes being upregulated are pathogenic,” she adds. “It’s a novel and exciting research area with significant public health implications.”
Smith’s work focuses on the role of astrocytes, specialized star-shaped glial cells, in modulating synaptic plasticity via norepinephrine. Conventional thinking describes astrocytes as support cells but, according to Smith, astrocytes are turning out to be more instrumental.
Norepinephrine, a neurotransmitter that plays an essential role in attention and focus, is released by a process known as volume transmission, which is a widespread release of a neurotransmitter at once, says Smith, a principal investigator in Children’s Center for Neuroscience Research. Astrocytes, which outnumber neurons in the brain, are strategically and anatomically located to receive this diffuse input and translate it into action to modulate neural networks.
“We hypothesize that astrocytes are integral, functional partners with norepinephrine in modulating cortical networks,” Smith adds. “Since astrocytes and norepinephrine have been implicated in many central nervous system functions, including learning and attention, it is critical to define mechanistically how astrocytes and norepinephrine work together to influence neural networks. This knowledge also will be important for the development of novel therapeutics to treat diseases such as attention deficit hyperactivity disorder and epilepsy.”
Children’s National Chief Research Officer Vittorio Gallo, Ph.D., recently had the honor of presenting a presidential lecture at the 48th Annual Meeting of the American Society for Neurochemistry (ASN). The lecture focused on his lifelong investigations of the cellular and molecular mechanisms of white matter development and injury, including myelin and glial cells – which are involved in the brain’s response to injury.
Specifically, he outlined the underlying diffuse white matter injury observed in his lab’s pre-clinical model of perinatal hypoxia, and presented new, non-invasive interventions that promote functional recovery and attenuate developmental delay after perinatal injury in the model. Diffuse white matter injuries are the most frequently observed pattern of brain injury in contemporary cohorts of premature infants. Illuminating methods that might stimulate growth and repair of such injuries shows promise for potential noninvasive strategies that might mitigate the long-term behavioral abnormalities and developmental delay associated with premature birth.
Dr. Gallo’s work in developmental neuroscience has been seminal in deepening understanding of cerebral palsy and multiple sclerosis. During his tenure as center director, he transformed the Center for Neuroscience Research into one of the nation’s premier programs.
ASN gathers nearly 400 delegates from the neurochemistry sector each year, including bench and clinical scientists, principal investigators, graduate students and postdoctoral fellows all actively involved in research from North America and around the world.
With sponsorship from Cerner Corporation, Children’s National held the first Population Strategies for Children’s Health (PSCH) event on February 19 – 20, 2018 at The Westin City Center in Washington, D.C. Speakers and attendees gathered from around the country to discuss pediatric population health and the transition to value based care.
PSCH opened with an insightful presentation from Ellen-Marie Whelan Ph.D., CRNP, FAAN, chief population health officer at the CMS Center for Medicaid and CHIP Services. Her presentation, “Medicaid Transformation to Value Based Care,” explored an incentivized health care delivery system reform that will result in better care, smarter spending and healthier people.
Sean Gleeson, M.D., M.B.A., president of Partners for Kids at Nationwide Children’s Hospital, spoke about the mechanics of Partners for Kids and the population health strategies they choose to implement. These strategies require an entire enterprise to be engaged and they must be an intentional component of each healthcare organization. Dr. Gleeson put it simply that population health turns healthcare “right side up” by tying financial incentives to positive value outcomes versus upside down when health organizations make more money when kids are sicker.
A presentation from William Feaster, M.D., M.B.A., chief medical information officer at CHOC Children’s Hospital, and Brian Jacobs, M.D., vice president, chief medical information officer and chief information officer at Children’s National Health System, delved into implementing condition-specific pediatric registries. They highlighted that it’s necessary to integrate registries and workflows into the daily work of clinicians and make them actionable to encourage engagement.
Another highlight of the conference was the millennial panel “The Current and Future State of Health Care from a Consumer’s Perspective.” The panel consisted of Janice Bitetti, a physician and mother of a 10-year-old with Type 1 diabetes; Jonathan Morris, a 15-year-old Type 1 Diabetes patient at Children’s National; and moderator Emily Webber, M.D., FAAP, chief medical information officer at Riley Children’s Hospital. Panel participants shared their take on the current state of Type 1 diabetes care, and the way millennials interact with healthcare. Both Jonathan and Janice agreed that the intensive nature of Type 1 diabetes care puts many families who don’t have the time, resources and initiative that they do in a very difficult place.
Other speakers throughout the two day event explored topics including population health strategies to reduce child health disparities, the role of telehealth in population health, care coordination and coaching to health, and technology in population health.
The Pediatric Orthopaedic Society of North America (POSNA) will hold its 2018 annual meeting May 9-12, 2018 in Austin, TX. POSNA is dedicated to improving the care of children with musculoskeletal disorders through education, research and advocacy. Along with 1,400 othopeadic surgeons, physicians and other health care professionals, experts from Children’s National will attend and participate in the following activities:
- Matthew Oetgen, M.D., M.B.A., Division Chief of Orthopaedic Surgery and Sports Medicine, along with hospitalists Rita Fleming, M.D., and Anjna Melwani, M.D., will give a presentation on quality, safety and value titled, “Hospitalist co-management of pediatric orthopedic patients improves outcomes and quality processes.”
- Danielle Putur, M.D., Miguel Pelton, M.D., Niharika Patel, M.P.H., and Emily Niu, M.D., will present a poster titled, “ACL growth with age in the skeletally immature: an MRI study.”
- Benjamin Martin, M.D., will present a poster titled, “The effectiveness of intrathecal morphine compared to oral methadone for postoperative pain control after posterior spinal fusion for adolescent idiopathic scoliosis.”
As a newly elected POSNA board member, Dr. Oetgen will also preside over the clinical award session, as well as chair the Spine Subspecialty Day, which is designed to update surgeons on current, cutting-edge topics and provide tips and tricks on a range of issues related to adolescent idiopathic scoliosis and moderate a discussion at this year’s meeting.
Additionally, Benjamin Martin, M.D., recently won the 2017 POSNA Clinical Trials Planning Grant – “The Treatment of Pediatric Diaphyseal Femur Fractures: A Clinical Trials Planning Grant.”
Visit the POSNA website to find out more information on this year’s conference.