DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL INSTITUTES OF HEALTH
Fiscal Year 2015 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 (FY) 2015 President’s Budget Request for the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) of $1,283,487,000. This reflects an increase of $2,657,000 over the FY 2014 level of $1,280,830,000.
Understanding human development, both normative and atypical, comprises the core of NICHD’s mission. The Institute supports a broad range of research, conducted largely at academic institutions across the country, ranging from efforts to increase understanding of basic biological mechanisms to testing health interventions aimed at improving the lives of children, women, families, and those with disabilities. NICHD-supported research contributes to knowledge about our health, from the earliest stages through maturity.
Pregnancy and Birth Outcomes
Based on NICHD-supported research showing less than optimal health outcomes for infants born at 37 and 38 weeks of pregnancy (previously considered full-term), leading professional societies announced in the past year a new policy that pregnancy would now be considered full-term only after 39 weeks. This change should lead to improved standards of care and better health outcomes for mothers and infants.
While previous studies had found that alcohol and illegal drug use during pregnancy frequently produce poorer infant health outcomes, a NICHD-funded network study has now provided evidence that smoking (including secondhand smoke), prescription painkillers, and illegal drugs used during pregnancy can double or triple the risk of stillbirth. These findings provide women and their clinicians important information about healthy behaviors in pregnancy.
Through our Hunter Kelly Newborn Screening Research Program, NICHD has long provided the evidence base for determining whether a health condition can be detected in newborns, and whether it can be cured or treated. Currently, most states screen newborns for a panel of 29 conditions, thus preventing extensive disease and disability. Now NICHD is partnering with the National Human Genome Research Institute on a major study to explore the possibilities for early diagnosis of a much larger number of disorders by sequencing newborns’ genomes, while also exploring technical, clinical, and ethical questions raised by this new technology. Researchers also plan to develop a tool to help parents understand sequencing results, placing special emphasis on the needs of families from diverse cultures and their clinicians.
Pediatric and Adolescent Development
For many conditions, the earlier they are identified and treatment begun, the better the outcome. One of the goals of the NICHD-led National Children’s Study is to amass an unprecedented amount of information about children’s health, development, and environment to understand and improve health. Recently, researchers supported by NICHD have developed an updated screening tool, administered to parents, to help determine if a child between 18 months and two years old has autism, much earlier than the current average age of diagnosis of four years. Previous research has shown that earlier interventions can help improve developmental outcomes for children with autism. This tool is now widely available online, in 45 different languages.
Since variations in nutrition and environment so heavily influence children’s growth and development, NICHD engages in international studies to increase knowledge about optimal health in childhood. In some nutrient-deficient areas, children receive iron supplements to enhance development and prevent anemia; yet, recently, public health officials have become concerned that these supplements may increase children’s risk for malaria. To test this theory, NICHD-supported researchers conducted a randomized clinical trial combining iron supplementation with prevention efforts (such as sleeping nets) in a malaria-prone area of Ghana, finding that the incidence of malaria was no higher for children who received the supplements than for those who did not, and assuring that beneficial iron supplementation could continue.
Understanding human development in adolescence, with that period’s substantial physical, mental, and behavioral changes, poses a particular challenge for researchers. While there is increased emphasis on encouraging young people to be physically active to reduce overweight and increase health, engaging in some physical activities may pose risks. Concerns have been raised about the potential long-term effects of repeated concussions in children, especially young athletes. Recently, NICHD partnered with other NIH ICs and the National Football League on eight research projects to help understand the effects of head injuries and improve the diagnosis of concussions. Although awareness is increasing that young people who may have had a concussion should not immediately return to play, these studies will help us understand the brain’s healing process and what is required to prevent permanent damage to this vital organ, leading to such advances as more precise return to play policies.
Parents of teenagers will not be surprised that adolescents often engage in risk-taking behaviors. They may, however, be surprised that informed parental supervision can have an impact on adolescent behaviors and even on potential injury or death. An intramural NICHD study on teen driving behaviors collected data from a nationally representative sample of 10th graders, finding that adolescents who reported being exposed to riding with an intoxicated driver in the 10th grade were considerably more likely to report driving while intoxicated in the 12th grade. The study indicates the importance of parents’ not only monitoring their own children’s driving behaviors, but also that of other young drivers with whom their children may be riding.
One result of NICHD’s 2012 “Scientific Visioning” process, which took a fresh look at what the Institute might accomplish across its broad mission over the next decade, was the establishment of the new extramural Gynecologic Health and Disease Branch. Researchers supported by the branch recently shed light on the relative success and safety of two surgical treatments for pelvic organ prolapse (a form of pelvic hernia). Previous research supported by NICHD suggested about three percent of U.S. women experience prolapse in a given year, most commonly older women and those who have given birth several times. The study found no statistically significant difference between the two types of surgery, providing critical information for surgeons and the 300,000 U.S. women who have this surgery each year.
Individuals with Special Needs
NICHD has long supported research on the causes and effects of intellectual and developmental disabilities, and on identifying effective therapies for these conditions. By working closely with leading researchers, clinicians, self-advocates, and families, Institute scientists identify the scientific resources most critical to ongoing progress on these conditions. In September 2013, NICHD, with the support of the NIH Down Syndrome Working Group and the Down Syndrome Consortium, launched DS-Connect™: The Down Syndrome Registry. DS-Connect™, which already includes over 1,500 registrants, is a web-based, voluntary, secure health registry serving the Down syndrome community, providing anonymized information to families and clinicians, and facilitating connections between researchers and potential clinical research participants. In addition, the Down syndrome community recently provided extensive input on a revised NIH Research Plan on Down Syndrome, which will be available mid-2014.
Another pressing need for scientists conducting research on cognition and brain disorders is the availability of sufficient brain tissue specimens. While NIH historically has funded investigator-initiated, disease-specific brain banks, it is now taking a new approach to providing these scarce research resources by supporting a tissue-sharing collaboration among five brain banks. This new “NeuroBioBank” will increase availability of biospecimens and establish a standardized resource for the research community.
Embracing Research Opportunities
Increasingly, biomedical and biobehavioral researchers need to work in transdisciplinary teams, manage massive amounts of data, and acquire new and diverse skill sets. For example, the medical rehabilitation needs of those with physical disabilities require a wide range of research, from improving our understanding of neurological repair to developing new generations of prostheses and assistive devices. In 2012, a Blue Ribbon Panel made a series of recommendations to NICHD to bolster rehabilitation research at NICHD’s National Center for Medical Rehabilitation Research (NCMRR) and across NIH. NICHD is implementing an innovative new operating model for NCMRR that is intended to greatly increase coordination of rehabilitation research among the many ICs that support it.
NICHD is excited to launch the Human Placenta Project, a coordinated international initiative to understand in real time the structure and function of the human placenta, arguably the least understood human organ. The placenta is not only critical for both maternal and fetal health, but also has substantial implications for conditions that arise later in life in both the mother and child, such as cardiovascular disease. The Project’s goals include understanding placental development in normal and abnormal pregnancies, developing biomarkers to help predict adverse pregnancy outcomes, and developing interventions to prevent abnormal placental and fetal development. The currently projected span of the project is a decade, beginning with a workshop in May 2014 to develop a research plan.
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.