Diana W. Bianchi, MD, is the director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH). She is board certified in pediatrics, medical genetics, and neonatal-perinatal medicine. Prior to joining NICHD as director in 2016, she spent 23 years at Tufts Medical Center in Boston, Massachusetts, where she was the founding executive director of the Mother Infant Research Institute, as well as the Natalie V. Zucker professor of Pediatrics, Obstetrics and Gynecology.
Bianchi recently answered questions from the American Psychological Association, covering issues related to child development, digital media, maternal mortality, postpartum depression, and NICHD’s role in NIH-wide efforts to address the COVID-19 pandemic and opioid epidemic.
Can you describe NICHD’s role within NIH in supporting research addressing the COVID-19 pandemic, especially related to developmental impacts and outcomes?
The rapid and unexpected onset of the COVID-19 pandemic in the middle of the fiscal year did not give us time to adequately plan a research agenda. Instead we made a strategic decision to deploy whatever resources were available to collect data and evaluate therapeutic approaches for our core populations: children, pregnant women, and people with physical and intellectual disabilities.
As part of NIH’s overall research efforts against COVID-19, NICHD seeks to improve the understanding of how SARS-CoV-2 infection may affect maternal, fetal, and infant outcomes. For example, in March 2020 researchers in NICHD’s Maternal-Fetal Medicine Unitsopens in new window (MFMU) Network designed a study known as GRAVID: Gestational Research Assessments for coVID that is analyzing medical records of 24,500 women to determine if changes to healthcare delivery resulting from the pandemic affect the rate of pregnancy complications and cesarean delivery. Additionally, the MFMU Network, encompassing 12 U.S. clinical centers, will track the health of up to 3,000 pregnant women diagnosed with COVID-19, monitoring their health for six weeks after childbirth. Data from the study will be shared with a larger registry to inform future studies of COVID-19’s effects on pregnancy and maternal health.
A related study will estimate the prevalence of SARS-CoV-2 infection during pregnancy in the NICHD-funded Global Network for Women’s and Children’s Health Researchopens in new window. Researchers will compare the maternal, fetal, and newborn outcomes of women diagnosed with SARS-CoV-2 infection to those of noninfected pregnant women. The study will include 2,000 women from each of eight sites distributed among Guatemala, Bangladesh, India, Pakistan, Kenya, Democratic Republic of Congo, and Zambia.
The NIH-Wide Strategic Planopens in new window for COVID-19 Research describes a framework for speeding development of new treatments, vaccines, and diagnostic methods for the disease. As part of this framework, NICHD and the National Heart, Lung, and Blood Institute (NHLBI) lead the NIH-wide task force on multisystem inflammatory syndrome in children (MIS-C), the rare but serious condition that develops after the initial SARS-CoV-2 infection subsides. Multiple, coordinated studies are ongoing to understand acute and long-term complications of MIS-C. Recently, NICHD received $20 million from the RADx-rad initiative to spur research on why most children with COVID-19 remain asymptomatic or have only mild symptoms, yet others develop MIS-C (funding opportunity announcementopens in new window).
Through a funding opportunity announcementopens in new window, NICHD and other NIH components are encouraging grantees to seek additional funding for studies that address social and behavioral aspects of the COVID-19 pandemic, including how workplace and school shutdowns have increased screen time and digital media use, and the effect of homeschooling and distance learning on child and adolescent cognitive and social-emotional development, peer interactions, and family functioning.
Children’s use of digital media and related technologies was ubiquitous even prior to the pandemic; now with in-person schooling on hold and physical distancing guidelines in place, these tools are being used for so much more. What is NICHD doing to better understand the use, impact, and outcome of these technologies?
NICHD recently hosted the workshop Media Exposure and Child Development (PDF, 433KB)opens in new window, which featured experts from several fields offering neuroscience perspectives on children’s media exposure and discussing implications for learning and language development. Participants identified knowledge gaps and promising directions for future research, including longitudinal studies of media exposures for diverse groups of children, such as those with intellectual and developmental disabilities; the use of neuroimaging to identify variations in brain development that might be associated with electronic media exposure; and multidisciplinary approaches to determine the effects of these technologies on children’s development.
Given the pandemic and increase in distance learning, we will encourage research projects that will address the effects of increased screen time and the use of digital media as stated in the Child Development and Behavior Branch’s prioritiesopens in new window on the NICHD website.
There was recent legislative language regarding NICHD in an appropriations report from the U.S. House of Representatives that encouraged research in areas such as behavioral health, cognition, language, and learning. What are NICHD’s plans moving forward?
The research themes in our 2020 Strategic Plan (PDF, 2.29MB)opens in new window reinforce NICHD’s traditional areas of emphasis by introducing new tools and techniques for understanding them. Behavioral health, cognition, language, and learning are essential domains for furthering the Strategic Plan’s Theme 4, Improving Child and Adolescent Health and the Transition to Adulthood. NICHD’s commitment to making advances in these domains remains steadfast.
This theme focuses on understanding the developmental impact of prolonged exposure to electronic technology and media use. Research in language development, but also neurodevelopment, neuroplasticity, and executive functioning will be essential for achieving this understanding. Similarly, this aspect of the plan provides for the development of behavioral health measures for such outcomes as body mass index, physical activity levels, and cortisol levels. These measures will be essential to evaluating the effects of these technologies on children of different ages and racial, ethnic, and economic backgrounds. Also critical is understanding not only how digital media relates to typical and atypical neurocognitive, social, and emotional developmental trajectories, but also how the effects of episodic exposures, such as cyberbullying, and of systemic exposures, such as virtual learning in response to the pandemic, influence such health outcomes as sleep and physical activity.
In addition, the Strategic Plan’s Theme 1, Understanding the Molecular, Cellular, and Structural Basis of Development, outlines the opportunities for identifying the typical developmental processes to elucidate underlying mechanisms of congenital conditions, such as structural birth defects, neurodevelopmental disorders, and intellectual and developmental disabilities. Studies on neurodevelopment also have implications for understanding cognition, learning, and specific learning disorders. They also will help to identify sensitive periods for neurodevelopmental milestones, which can guide more effective preventive, diagnostic, and intervention efforts.
Finally, through its Child Development and Behavior Branchopens in new window, NICHD will continue its longstanding support for studies on learning and behavioral health. The Branch’s Behavioral Pediatrics and Health Promotion Research Program focuses on the establishment of healthy behaviors and the reduction of risky behaviors, from childhood through early adulthood. The program in Early Learning and School Readiness supports research to prepare children for school entry and later achievement. The Language, Bilingualism, and Biliteracy Program supports research in language development and reading ability in bilingual and English language learners. Moreover, the program in Reading, Writing, and Related Learning Disabilities focuses on increasing understanding of normal and atypical development of reading and written language skills.
Can you provide an update on the ACT NOW initiative and NICHD’s role in addressing the opioid epidemic, including the use of nonpharmacologic interventions?
Advancing Clinical Trials in Neonatal Opioid Withdrawal (ACT NOWopens in new window) is part of the NIH-wide Helping to End Addiction Long-termSM (HEALopens in new window) initiative. The ACT NOW program seeks to inform the clinical care of infants exposed to opioids in utero. At present, there are no national standards for how to treat newborns. A pilot studyopens in new window demonstrated that each nursery uses different approaches.
One ACT NOW study, called Outcomes of Babies with Opioid Exposureopens in new window, will investigate how opioid exposure in the womb may affect infant brain development in the first two years of life and examine potential associations between changes in neural tissue and developmental and neurobehavioral outcomes. The investigators also will explore how such factors as differing opioid exposure, severity of newborn opioid withdrawal, and parenting may modify outcomes of opioid-exposed infants. The ACT NOW trial to Shorten Pharmacologic Treatment of Newborns with Neonatal Opioid Withdrawal Syndrome will seek to determine if it is possible to reduce the length of time needed to wean infants who receive pharmacological treatment off medications.
Another study, called Eat, Sleep, Consoleopens in new window, will compare a traditional, point-based scoring system for newborn opioid withdrawal symptoms to a tool that assesses a newborn’s ability to perform critical functions like eating and sleeping. The goal of the study is to reduce the number of infants who need opioid treatment to ease dependence and to reduce the length of their hospital stay.
Because many pregnant women with opioid use disorders are currently being treated with buprenorphine, it is important to determine the benefits and limitations of treatment with buprenorphine in infants. Sponsored by the HEAL initiative, NICHD co-led a workshop in August 2020 to address this issue.
What is NICHD doing to better understand maternal health, including areas such as maternal mortality, and perinatal and postpartum depression?
NICHD supports a broad range of maternal health research, including studies of high-risk pregnancy conditions that may lead or contribute to maternal morbidity and mortality, such as preeclampsia, postpartum hemorrhage, HIV and other maternal infectious diseases, and gestational diabetes.
NICHD co-leads the NIH Task Force on Maternal Mortalityopens in new window, along with the NIH Office of Research on Women’s Health and the NIH Office of the Director. The Task Force’s goal is to support research to reduce the rates of life-threatening complications of pregnancy, labor and delivery, and the postpartum period. NICHD funds more than 65% of NIH research on specific conditions related to maternal morbidity and mortality.
An estimated 700 women die each year in the U.S. from conditions related to or associated with pregnancy or childbirth (the highest rate among developed nations), and over 50,000 women experience severe maternal morbidity. Implementing Maternal health and Pregnancy Outcomes Vision for Everyone (IMPROVE) is a new initiativeopens in new window by NICHD and other NIH components encouraging grantees to seek additional funding for studies to mitigate maternal morbidity, decrease severe maternal morbidity, and promote health equity in the United States. IMPROVE seeks to target health disparities among the populations severely affected by maternal morbidity and severe maternal morbidity: racial and ethnic minorities, very young women, women of advanced maternal age, and people with disabilities.
In addition, NICHD’s PregSource® is a research project seeking to improve the understanding of pregnancy by gathering information directly from pregnant women through confidential online questionnaires. After creating an account on PregSourceopens in new window, pregnant women can enter information about their pregnancies until after they deliver their infants. In exchange, they can track their data over time, share reports with their healthcare team, and see how they compare to other women in the project. PregSource also provides participants with links to reliable information about pregnancy.
Finally, the NICHD initiativeopens in new window “Mom’s Mental Health Matters” provides information and materials for patients and clinicians about maternal and postpartum depression and anxiety, both significant contributors to maternal morbidity. The initiative seeks to raise awareness among women and their families that depression and anxiety around the time of pregnancy are treatable disorders.
NICHD has long been a leader in research aimed at better understanding intellectual and developmental disabilities. What work is NICHD currently supporting in these areas?
Through its Intellectual and Developmental Disabilities Branchopens in new window, NICHD funds research in genetic and genomic abnormalities associated with atypical development, and biochemical processes and metabolism related to brain functioning and brain injury. The branch also emphasizes research on family and community relationships of people with intellectual and developmental disabilities, with a focus on identifying optimal strategies to promote learning and adaptive skills in school, community, and home environments. Branch support for newborn screening research seeks to identify infants at risk for congenital disorders so that interventions may be provided that reduce morbidity and mortality. The branch also has an active program in autism spectrum disorders (ASDs) and other medical or genetic conditions that relate or contribute to autism, such as seizures or Fragile X syndrome. NICHD is one of five NIH institutes supporting the Autism Centers of Excellenceopens in new window program, which conducts large multidisciplinary studies seeking to determine the disorders’ causes and potential treatments.
NICHD-funded researchers also adapted the NIH Toolbox Cognitive Batteryopens in new window to people with intellectual and developmental disabilities. The toolbox is used to assess cognitive functioning in adults and children participating in neuroscience research. The adaptations ensure that the battery can be used to assess the cognitive ability of people with intellectual disabilities who have a mental age of 5 years and above, providing objective measures that allow people with intellectual disabilities to participate in neuroscience studies.
In addition, NICHD co-leads the INCLUDEopens in new window (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) project, a trans-NIH research initiative on health and quality of life concerns for people with Down syndrome. Individuals with Down syndrome are disproportionately affected by Alzheimer’s disease, hearing loss, congenital heart defects, and sleep apnea. However, they have much lower risks for other conditions. For example, they develop solid tumors, such as breast and prostate cancer, only infrequently, and have fewer heart attacks than the general population, despite risk factors such as obesity and diabetes.
Finally, NICHD supports and leads DS-Connect®: The Down Syndrome Registryopens in new window. Individuals of all ages with Down syndrome or their family members can sign up to create personalized health profiles of their medical histories, diagnoses, and symptoms; a registry coordinator may contact them about research studies in which they might take part.
