DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL INSTITUTES OF HEALTH
Fiscal Year 2016 Budget Request
Statement for the Record
Senate Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies
Alan E. Guttmacher, M.D., Director
Eunice Kennedy Shriver National Institute of Child Health and Human Development
Mr. Chairman and Members of the Committee, I am pleased to present the Fiscal Year 2016 President’s Budget Request for the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) of $1,318,061,000. This reflects an increase of $31,490,000 over the FY 2015 level of $1,286,571,000.
Understanding human development, both normative and atypical, is at the core of NICHD’s mission. The Institute supports a broad range of research from increasing our understanding of basic biological mechanisms to testing health interventions aimed at improving the lives of children, women, families, and those with disabilities.
Pregnancy and Birth
NICHD recently announced funding to launch the Human Placenta Project, an initiative that will develop technologies to assess, in real time, the structure and function of the human placenta. Critical for both maternal and fetal health, the placenta also has substantial implications for long-term health of both mother and child. The Project’s goals include understanding normal and abnormal placental development, developing biomarkers to predict adverse pregnancy outcomes, and developing interventions to prevent abnormal placental and fetal development. The Project will also examine the effects of environmental factors, such as pollution, medications, or diet on the placenta.
In the coming year, NICHD will launch “MyPregnancy,” a longitudinal, crowd-sourced, citizen science approach that gathers information about pregnancy from the experts - pregnant women. This will deepen our knowledge about what women experience physically and emotionally during pregnancy and after giving birth, the effects of pregnancy on women’s lives, the challenges pregnant women face, such as health issues related to disability or a chronic health condition, and what features are common to many pregnancies. Participants will use web-based or mobile devices to enter information via online questionnaires and will be able to print out reports to share with their health care team and view summaries of de-identified data to see how they compare to other women. MyPregnancy will also provide links to evidence-based information about pregnancy from trusted partner agencies and organizations and about other ways to participate in research about pregnancy. MyPregnancy will inform pregnant women while involving them in finding ways to improve pregnancy care.
Through the Hunter Kelly Newborn Screening Research Program, NICHD has long provided much of the evidence for determining whether a health condition can be detected in newborns, and whether it can be treated or cured. Currently, most states screen newborns for a panel of 29 conditions, thus preventing extensive disease and disability. However, the newest technologies, such as genome sequencing, raise new social and ethical questions. NICHD recently hosted a meeting to discuss the research implications of new informed consent requirements mandated by the 2014 Newborn Screening Saves Lives Act reauthorization, and is providing guidance about how to meet the law’s requirements while preserving this lifesaving research.
Building on two decades of research that has helped decrease United States infant mortality rates, NICHD continues to expand its work to prevent sudden unexplained infant deaths, both through research on risk factors and a major public education campaign. Because of this ongoing research, the original “Back to Sleep” message has evolved to “Safe to Sleep,” encouraging parents and infant caregivers to create safe sleep environments throughout the day and night while continuing other health-promoting practices, such as breastfeeding. NICHD is supporting particular outreach efforts to tailor culturally sensitive messages to underserved populations.
Pediatric Development and Rehabilitation from Injury
NICHD studies of brain development shed light on how human brains function, including insights into abnormal function, so that effective interventions can be developed. One new study found that children who have overweight or obesity are slower than children with healthy weight to recognize when they have made an error, and are slower to correct that error. Although the effects of childhood obesity on later chronic health conditions has been well documented, this is one of the first studies to show that having overweight can affect how well a child organizes and prioritizes thoughts.
Other NICHD-funded researchers used new technologies to track myelination, the development of the brain’s “white matter,” in children from kindergarten through third grade. The developmental course of the children’s white matter predicted ability to read, raising the possibility that this method could be used to diagnose children with dyslexia and other reading disorders before they experience problems in school.
Understanding human development in adolescence, with its substantial physical, mental, and behavioral changes, poses a particular challenge. While many programs encourage physical activity, concerns have arisen about the long-term effects of activity-related traumatic brain injury (TBI) in young people, who often quickly recover basic intellectual functioning and learning ability, but may have longer-term trouble with complex tasks, such as schoolwork, driving, or social interactions. Recently, NICHD-funded researchers developed a way to shorten TBI recovery time through “gist training,” which helps young people extract the fundamental meaning of a conversation or article while leaving out the details, a skill basic to everyday functioning.
Individuals with Special Needs
NICHD has long supported research on intellectual and developmental disabilities, and on developing therapies for these conditions. With the support of the trans-NIH Down Syndrome Working Group and the public-private Down Syndrome Consortium, NICHD launched DS-Connect™: The Down Syndrome Registry. DS-Connect™, now including 2,800 registrants, is a web-based, voluntary, secure health registry that provides anonymized information to families and clinicians. This year, DS-Connect™ added a special subsite for researchers and health care professionals. Researchers may sign up for free access to de-identified data, or work with the registry coordinator to find participants for clinical trials, to help increase our understanding of Down syndrome and how to treat its accompanying health issues across the lifespan.
Embracing Research Opportunities
Increasingly, researchers need to work in transdisciplinary teams, manage massive amounts of data, and acquire new and diverse skill sets. Therefore, NICHD is establishing a new publicly accessible, online data and specimen hub to enable sharing of data and biospecimens from NICHD-supported studies. This archive will maximize use of research findings, not only for the original study purposes, but through secondary analyses as well. We expect to add data from eight to ten studies a year, eventually creating a rich information source for the entire research community.
Thank you for the opportunity to submit some of NICHD’s accomplishments over the last year and a few of its many exciting plans for the immediate future.