The NIH Almanac
The mission of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) is to ensure that every person is born healthy and wanted, that women suffer no harmful effects from the reproductive process, that all children have the chance to fulfill their potential to live healthy and productive lives free from disease or disability, and to ensure the health, productivity, independence, and well-being of all people through optimal rehabilitation.
In pursuit of this mission, the NICHD conducts and supports laboratory research, clinical trials, and epidemiological studies that explore health processes; examines the impact of disabilities, diseases, and defects on the lives of individuals; and sponsors training programs for scientists, doctors, and researchers to ensure that NICHD research can continue.
NICHD research programs incorporate the following concepts:
- Events that happen prior to and throughout pregnancy, as well as during childhood, have a great impact on the health and well-being of children and adults. The Institute supports and conducts research to: advance knowledge of pregnancy, fetal development, and birth for developing strategies that prevent maternal, infant, and childhood mortality and morbidity; identify and promote the prerequisites of optimal physical, mental, and behavioral growth and development through infancy, childhood, and adolescence; and contribute to the prevention and amelioration of mental retardation and developmental disabilities.
- Human growth and development is a life-long process that has many phases and functions. Much of the research in this area focuses on cellular, molecular, and developmental biology to build understanding of the mechanisms and interactions that guide a single fertilized egg through its development into a multi-cellular, highly organized adult organism.
- Learning about the reproductive health of women and men and educating people about reproductive practices is important to both individuals and societies. Institute-supported basic, clinical, and epidemiological research in the reproductive sciences seeks to develop knowledge that enables women and men to overcome problems of infertility, and to regulate their fertility in ways that are safe, effective, and acceptable for various population groups. Institute-sponsored behavioral and social science research in the population field strives to understand the causes and consequences of reproductive behavior and population change.
- Developing medical rehabilitation interventions can improve the health and well-being of people with disabilities. Research in medical rehabilitation seeks to develop improved techniques and technologies, with respect to the rehabilitation of individuals with physical disabilities resulting from diseases, disorders, injuries, or birth defects.
The Institute also supports research training across all its programs, with the intent of adding to the cadre of trained professionals who are available to conduct research in areas of critical public health concern. In addition, an overarching responsibility of the NICHD is to disseminate information that emanates from Institute research programs to researchers, practitioners, other health care professionals, and the public.
Important Events in NICHD History
January 12, 1961 — The report of the Task Force on Health and Social Security calls for the establishment, by administrative action of the U.S. Surgeon General, of a National Institute of Child Health within the National Institutes of Health (NIH).
January 30, 1961 — The U.S. Department of Health, Education, and Welfare (DHEW) general counsel declares that existing legislation (enacted in 1950) limited the creation of new Institutes to those focusing on a disease or group of diseases, and that new legislation would be required to establish the Institute called for in the Task Force report.
February 17, 1961 — The Surgeon General establishes a Center for Research in Child Health in the Division of General Medical Sciences.
October 17, 1962 — Public Law 87-838 authorizes the establishment of the NICHD.
January 30, 1963 — Secretary of DHEW Anthony J. Celebrezze approves the establishment of the NICHD, with a provision that the Center for Research in Child Health and the Center for Research in Aging (established in 1956) be transferred from the Division of General Medical Sciences to the new Institute.
May 1963 — The Surgeon General appoints members of the National Advisory Child Health and Human Development (NACHHD) Council.
November 14, 1963 — The NICHD holds the first meeting of the NACHHD Council.
December 1965 — A major NICHD reorganization, approved by the Surgeon General, emphasizes four program areas: reproduction, growth and development, aging, and mental retardation. NICHD creates the Mental Retardation Research Centers to help develop research infrastructure at universities throughout the country. (These centers were later renamed the Eunice Kennedy Shriver Intellectual and Developmental Disabilities Research Centers.)
April 1967 — A second reorganization of the NICHD, approved by the Surgeon General, acknowledges the Institute's intramural research programs by separating responsibility for intramural and extramural research and creating seven intramural laboratories. The reorganization brings the NICHD administrative structure into line with that of other NIH Institutes.
August 9, 1968 — The DHEW Secretary establishes the Center for Population Research within the NICHD. The Center is responsible for contract and grant programs in population and reproduction research and is designated by the president as the federal agency primarily responsible for population research and training.
May 27, 1975 — The federal government establishes the Center for Research for Mothers and Children within the NICHD as the focal point for research and research training on the special health problems of mothers and children. The Center also has responsibility for increasing knowledge about pregnancy, infancy, childhood, adolescence, and adulthood, and for administering grant and contract programs related to these areas.
June 30, 1975 — The Adult Development and Aging Branch and the Gerontology Research Center, with their programs for support and conduct of research in the field of aging, are transferred from the NICHD to the newly established National Institute on Aging (NIA).
1978 — NICHD intramural researchers become the first to successfully clone a mammalian gene, a critical first step in obtaining large amounts of medically important proteins.
December 1983 — NICHD grantees Ralph Brinster and Richard Palmiter become the first to transplant human genes into animals. Their accomplishment, transplanting the gene for human growth hormone into mice, provides an important new means to study the function of human genes, as well as the foundation of the new biotechnology industry.
1985 — The NICHD forms research networks of Neonatal Intensive Care Units and Maternal-Fetal Medicine Units. The networks, which perform large clinical trials, provide the Institute with a faster, more effective system of evaluating neonatal intensive care and maternal-fetal treatments.
December 1989 — The NICHD announces the establishment of the country's first research centers that combine the biomedical and behavioral sciences to focus specifically on learning disabilities.
September 1990 — The Institute begins a congressionally initiated national program of Child Health Research Centers. The goal is to expedite the application of findings from basic research to the care of sick children.
November 16, 1990 — Congress establishes the National Center for Medical Rehabilitation Research within the NICHD to conduct and support programs for the rehabilitation, health, and well being of individuals with physical disabilities.
1991 — The NICHD expands its Epidemiology and Biometry Research Program to create the Division of Epidemiology, Statistics, and Prevention Research, part of its intramural research component. The Division's portfolio includes research in the fields of reproduction and maternal and child health.
1994 — The NICHD launches the Back to Sleep campaign, a program designed to teach parents and caregivers the importance of putting babies on their backs to sleep, to help reduce the risk of sudden infant death syndrome (SIDS).
January 1994 — In response to the need for appropriate drug therapy for pediatric patients, the NICHD establishes the Pediatric Pharmacology Research Unit Network. The Network's mission is to facilitate and promote pediatric labeling of new drugs or drugs already on the market, to ensure the safe and effective use of drugs in children.
September 1996 — Two NICHD scientists, Drs. John Robbins and Rachel Schneerson, receive the 1996 Albert Lasker Clinical Medical Research Award for the landmark development of a polysaccharide-protein conjugate vaccine for Hemophilus influenzae type b (Hib). Also in 1996, Robbins and Schneerson receive the World Health Organization Children's Vaccine Initiative Pasteur Award for Recent Contributions in Vaccine Development for their Hib vaccine breakthrough.
April 1997 – NICHD establishes the Specialized Cooperative Centers Program in Reproduction and Infertility Research (SCCPRIR), to provide high quality translational research programs in the area of reproduction and infertility, and to serve as national resources for the training and career development of new scientists conducting translational research in high priority areas of reproduction and infertility.
June 1997 –The NICHD and the National Institute on Deafness and Other Communication Disorders (NIDCD) establish the Network on the Neurobiology and Genetics of Autism, composed of 10 Collaborative Programs of Excellence in Autism (CPEAs). The CPEA Network is a multi-million dollar, international effort that seeks to solve the puzzle of autism through research.
September 1997 — The NICHD initiates the first phase of its National Longitudinal Study of Adolescent Health (called the Add Health Study). The study's main premise is that social context — such as relationships with families, friends, and peers — influences the health-related behaviors of young people, and that understanding this context is essential to guide efforts to modify health behaviors.
March 1998 — Using sophisticated brain imaging technology, NICHD-funded researchers reveal a brain map of the physical basis of dyslexia. This finding may provide the basis for screening techniques that will help identify dyslexia, allowing treatment to start earlier in a person's development.
June 1998 — In the largest, most comprehensive analysis of its kind, NICHD-funded research finds that pregnant women who are infected with HIV can reduce the risk of transmitting the virus to their infants by about 50% if they deliver by elective Cesarean section before they have gone into labor and before their membranes have ruptured.
July 1998 — The Food and Drug Administration approves an NICHD-developed DTaP (diphtheria-tetanus-acellular pertussis) vaccine for use in immunization against these diseases.
September 1999 — NICHD-funded researchers announce the discovery of the gene for Rett syndrome, a disorder in which healthy infant girls gradually lose their language capabilities, mental functioning, and ability to interact with others.
2000 — NICHD researchers demonstrate that inhaled nitric oxide is an effective therapy for respiratory failure in critically ill term infants in whom aggressive conventional therapy had failed. The findings, which resulted from the first definitive, randomized clinical trial of nitric oxide use in human neonates, may further reduce the long-term costs of caring for such children and improve their quality of life by reducing their risk for chronic respiratory insufficiency and central nervous system ischemia.
2000 — NICHD researchers evaluating data from the Fels Longitudinal Study, the oldest and largest growth study in the world, find that obesity in childhood tracks from age three years onward, into adulthood, and that obesity in adolescence is more likely to lead to adult obesity than obesity earlier in childhood. Data from the study, supported by NICHD since 1974, may allow researchers to ascertain the segregation of growth patterns over three generations, to detect linkage of candidate genes to various phenotypes of growth, and to permit the discovery of new descriptors of normal growth and underlying genetic mechanisms.
January 2000 — The Bill and Melinda Gates Foundation joins the NICHD in developing and supporting an international research network to improve the health of women and children throughout the world. The NICHD commits to match the Foundation's $15 million to help the network establish self-sustaining, international, and medical research institutions, which are urgently needed to address many of the world's health concerns.
April 2000 — The National Reading Panel, established by the NICHD, releases findings of the largest, most comprehensive, evidence-based review ever conducted of research related to how children learn to read. The independent panel concludes that the most effective way to teach children to read is through instruction that includes a combination of methods and addresses alphabetics (phonemic awareness and phonemic instruction), reading fluency, reading comprehension, teacher education, and computer technology.
October 2000 — An NICHD-funded study, conducted by researchers from Thailand, France, and the United States, shows that transmission of HIV from a mother to her child can be reduced nearly as effectively with shorter treatments of the drug AZT, as with longer AZT treatments. The findings may allow women in developing countries to better afford the treatment that can reduce their babies' chances of contracting AIDS.
October 2000 — An NICHD grantee, Dr. James J. Heckman of the University of Chicago, is 1 of 2 NIH researchers to receive the Bank of Sweden Prize in Economic Sciences in memory of Alfred Nobel. Dr. Heckman is awarded the Nobel Prize in Economics for his pioneering work in accounting for unknown factors affecting statistical samples. Much of his work has been applied to understanding how early life events contribute to individuals' later earning potential and economic standing.
February 2001 — The NICHD establishes three Fragile X research centers to conduct and support research related to improving the diagnosis and treatment of, and finding a cure for, fragile X and fragile X syndrome. This initiative was mandated under Public Law 106-310, the Children's Health Act, passed in October 2000.
June 2002 — Findings from the NICHD's Women's Contraceptive and Reproductive Experiences Study (Women's CARE) reveal no association between oral contraception use and an increased risk of breast cancer. The study, which focuses on women age 35 to 64 because they are more likely to develop breast cancer than younger women, provides scientific evidence that past or present oral contraception use does not significantly increase breast cancer risk.
2003 — In a first-of-its-kind collaboration, the NICHD, National Coalition of 100 Black Women, the Women in the NAACP, and Alpha Kappa Alpha Sorority, Inc., embark on a year-long program to spread the safe sleep message in African American communities. At regional summits held in Tuskegee, Los Angeles, and Detroit, the partners conduct SIDS risk-reduction training and activities to equip members and community leaders with educational techniques, strategies, and promotional materials so they can conduct outreach activities to reduce the risk of SIDS among African American infants.
June 2003 — The NICHD establishes the Center for Developmental Biology and Perinatal Medicine. The Center strives to advance fundamental and clinical knowledge about maternal health and problems of child development, such as preterm birth, mental retardation and developmental disabilities, congenital defects and genetic disorders, fetal growth restriction, and other conditions.
April 2004 — NICHD-supported researchers demonstrate that effective reading instruction not only improves reading ability, but also changes the functioning of the brain so that it reads more efficiently. The scientists used functional magnetic resonance imaging (fMRI) to observe brain functions in children during reading. With fMRI, the researchers could see that the brains of once-poor readers, as they overcame their reading disabilities, began to function like the brains of good readers. The findings show that the brain systems involved in reading respond to effective reading instruction and show increased activity in a part of the brain that recognizes words.
June 2004 — Reorganization within the NICHD's Center for Research for Mothers and Children establishes the Obstetric and Pediatric Pharmacology Branch to meet the increased demand for research leadership and support of legislation passed to ensure the safety of drugs used to treat children. The new Branch includes the NICHD Pediatric Pharmacology Research Units Network, the Obstetric-Fetal Pharmacology Research Network, and NICHD Best Pharmaceuticals for Children Act activities. The Branch provides a focus for managing efforts across the U.S. Department of Health and Human Services (HHS) to address this important topic.
November 2004 — The NICHD and its partner agencies announce the 96 recruitment locations for the National Children's Study, a national, longitudinal study of environmental influences on child health mandated in the Children's Health Act of 2000. The study is led by a consortium of federal agencies, including HHS (the NICHD and the National Institute of Environmental Health Sciences (NIEHS) within NIH, as well as the Centers for Disease Control and Prevention) and the Environmental Protection Agency.
December 2004 — Researchers in the NICHD Maternal-Fetal Medicine Units (MFMU) Network find that the risks from vaginal delivery after a prior Cesarean delivery are low, and are only slightly higher than for a repeat Cesarean delivery, thus clarifying the safety of vaginal birth after Cesarean. The largest, most comprehensive study of its kind indicated that, although complications (such as rupture of the uterus and infection of the uterine lining) were possible, the risk of these complications was very low. Further, the researchers noted that repeat Cesarean carries its own risks, including infection and surgical complications, and that the procedure may complicate future births. The MFMU Network allows researchers to conduct large clinical trials quickly, by recruiting from multiple sites and using one protocol, providing a faster, more effective system of evaluating maternal-fetal treatments.
April 7, 2005 — World Health Day — the Global Network for Women's and Children's Health Research, funded by the NICHD and the Bill and Melinda Gates Foundation, initiates the First Breath Project to treat newborn asphyxia, a major cause of infant death, in resource-poor settings. The new project seeks to determine if training midwives and other traditional birth attendants in standard infant resuscitation practices commonly used in the United States can reduce the death and disability from newborn asphyxia in seven Global Network sites located in South Asia, Africa, and Latin America. The project will include nearly 80 communities and 40,000 births per year during the course of the study.
October 2006 — As part of a decades-long research effort on SIDS, NICHD-funded researchers announce findings that infants who died of SIDS had abnormalities in the brainstem, a part of the brain that helps control heart rate, breathing, blood pressure, temperature, and arousal. The finding supports the concept that SIDS risk may greatly increase when an underlying predisposition combines with an environmental risk at a developmentally sensitive time in early life. Modifiable factors, such as sleep position, may provide the greatest protection against SIDS for infants with the brain abnormality.
December 2006/February 2007 — NICHD researchers discover two genetic defects that lead to forms of Osteogenesis Imperfecta (OI), a disorder that weakens bones and may cause frequent fractures. The first gene discovery — a recessive form that requires two copies of the affected gene to show the trait — was implicated in a previously unexplained but fatal form of OI; the second was related to other previously unexplained forms of the disorder. Although there is no treatment for the disorder, the finding allows clinicians to test families who have lost a child to OI for the presence of the defective gene. Couples with a child affected by these forms of OI could be apprised of their risk for conceiving another child with the disorder.
June 2007 — At the recommendation of the Blue Ribbon Panel Review and the Board of Scientific Counselors, the NICHD Division of Intramural Research was reorganized from 22 laboratories and branches to 10 programs, along with three branches, two sections, and three core facilities.
August 2007 — The NIH initiates the Autism Centers of Excellence (ACE) Program, a consolidation of two existing programs, the Studies to Advance Autism Research and Treatment (STAART) and Collaborative Programs of Excellence in Autism (CPEA), into a single research effort. The ACE Program seeks to expand on earlier discoveries made by research previously supported by the NIH. Funding and resources for the Program are provided by the NICHD, along with NIDCD, NIEHS, the National Institute of Mental Health, and the National Institute of Neurological Disorders and Stroke.
December 2007 — The President signs the bill renaming the NICHD as the "Eunice Kennedy Shriver National Institute of Child Health and Human Development."
January 2008 — The NIH, led by the NICHD, releases a research plan to advance understanding of Down syndrome and speed development of new treatments for the condition, which is the most frequent genetic cause of mild to moderate intellectual disability and associated medical problems. The plan sets research goals for the next 10 years that build upon earlier research advances fostered by the NIH. Among the plan elements are the need for increased research on the medical, cognitive, and behavioral conditions that occur in people with Down syndrome and the need to study whether aging has a greater impact on mental processes in people with Down syndrome than in people who do not have Down syndrome.
June 2008 — The NICHD serves as the scientific lead for the Surgeon General's Conference on the Prevention of Preterm Birth. The aim of the conference was to establish an agenda for activities in both the public and private sectors to speed the identification of, and treatments for, the causes of and risk factors for preterm labor and delivery. The agenda calls for a national system to better understand the occurrence of preterm birth and a national education program to help women reduce their chances of giving birth prematurely. The agenda also calls for improved methods for estimating the age of the fetus, and studies to identify biomarkers which would signal the beginning of preterm labor.
July 2009 — The NIH, led by the NICHD, releases a research plan to advance the understanding of Fragile X syndrome and its associated conditions, Fragile X-associated Tremor/Ataxia Syndrome and Fragile X-associated Primary Ovarian Insufficiency. The plan sets research priorities for each condition and includes investigating the biological processes underlying all three disorders and how to better diagnose and treat them. Other priorities are studying how widespread the gene variations are in the population and how the three conditions affect families.
October 2009 — The NICHD and NIH communities joined members of the newborn screening research community and the Hunter's Hope community — the foundation started by National Football League Pro Football Hall-of-Fame quarterback Jim Kelly and his wife Jill after their son Hunter was diagnosed with a rare, degenerative, fatal genetic disease — in inaugurating the Hunter Kelly Newborn Screening Research Program. The Program aims to identify new screening technologies and research management strategies for the conditions that such screening can detect.
August 2010 — NICHD-supported researchers — for the first time — are able to activate dormant mouse egg cells at the earliest stage of their development and bring them to full maturity within the laboratory. Researchers then fertilize and transfer the eggs into female mice, resulting in the birth of healthy offspring. In a related experiment, the researchers also mature follicles on human ovary tissues into viable egg cells in the laboratory.
February 9, 2011 — Results from an NICHD-funded study show the benefits and risks of prenatal surgery to repair myelomeningocele, the primary defect in the most severe form of spina bifida. Researchers in the Management of Myelomeningocele Study (MOMS) compared outcomes from the standard postnatal surgery treatment to outcomes from surgery done while the baby is still in the womb. The study shows that, despite a slight increase in risk for preterm delivery, mother and baby have better overall outcomes if the surgery is done before birth.
December 13, 2011 — The National Center for Medical Rehabilitation Research (NCMRR) within the NICHD marks its 20th anniversary with a scientific symposium. The event provides a forum for discussions of the Centerís founding and history, early years, and scientific accomplishments and features some of the leading names in rehabilitation research.
September 2012 — The NICHD and its collaborators expand the Back to Sleep campaign, which focused on sudden infant death syndrome (SIDS), into the Safe to Sleep campaign, with a broader emphasis on SIDS, safe sleep environments, infant health, and other sleep-related causes of infant death.
December 5, 2012 — The Institute commemorates the 50th anniversary of its founding with a series of volunteer activities and events related to the NICHDís mission. These activities culminate with a scientific colloquium that features the NIH and NICHD Directors, renowned researchers, Nobel laureates, and former NICHD leadership. At the same time, the Institute releases a Scientific Vision Statement, which was created in collaboration with Institute colleagues following in-depth discussions, identifying the most promising scientific opportunities of the next decade across the breadth of the NICHD mission.
December 2012 — NICHD reorganizes its extramural research program, consolidating the former Center for Population Research, Center for Research for Mothers and Children, and Center for Developmental Biology and Perinatal Medicine into the Division of Extramural Research. Two new Branches – Gynecologic Health and Disease, and Pediatric Trauma and Critical Illness – are added to the 12 that had existed in the three separate Centers.
September 2013 — NICHD launches DS-Connect, an online health registry to serve as a national health resource for people with Down syndrome and their families, researchers, and health care providers. View Image.
September 2013 — The Division of Epidemiology, Statistics, and Prevention Research changes its name to the Division of Intramural Population Health Research to reflect its renewed focus on population health.
May 2014 — NICHD launches the Human Placenta Project to develop the capability to assess placental structure, function, and development in real time over the course of a human pregnancy, with the ultimate goal of improving lifelong health of mothers and children. View Image.
December 12, 2014 — NIH ends the National Children’s Study, following reviews by external advisory groups that expressed concerns about its feasibility given budget constraints. NIH considers new research plans to explore the links between the environment and child health and development.
NICHD Legislative Chronology
October 17, 1962 — Public Law 87-838 authorizes the U.S. Surgeon general, with approval of the Secretary of the DHEW, to "establish in the Public Health Service (PHS) an institute for the conduct and support of research and training relating to maternal health, child health and human development, including research and training in the special health problems and requirements of mothers and children and in the basic sciences relating to the processes of human growth and development, including prenatal development."
October 31, 1963 — Public Law 88-164 provides grants to support the construction of research centers for mental retardation and related disabilities. The NICHD remains closely associated with some 12 centers installed prior to June 30, 1967, when the authority expires.
December 24, 1970 — Public Law 91-572 adds Title X to the PHS Act to authorize grants and contracts for research and research training in family planning and population problems. The DHEW Secretary delegates the authority to the NICHD, where the program is administered by the Center for Population Research.
April 22, 1974 — Public Law 93-270 assigns the task of conducting research on SIDS and reporting on it to the Congress to the DHEW Secretary and, ultimately, to the NICHD.
July 29, 1975 — Title II of Public Law 94-63, the Family Planning and Population Research Act of 1975, amends Title X of the PHS Act. Thereafter the PHS can conduct and support population research. Title X becomes the sole authority for population research appropriations.
August 13, 1981 — The Budget Reconciliation Act of 1981, Public Law 97-35, repeals sections 1004(b)(1) and 1004(b)(2) of the PHS Act. Once enacted, authority for supporting research in human reproduction and the population sciences derives from the broad provisions of sections 301 and 441 of the PHS Act.
November 20, 1985 — The Health Extension Act of 1985 directs the NICHD to appoint an Associate Director for Prevention, "to coordinate and promote the programs in the Institute concerning the prevention of health problems of mothers and children."
November 16, 1990 — Section 3 of the NIH Amendments of 1990, Public Law 101-613, establishes the National Center for Medical Rehabilitation Research. The Center will conduct and support programs with respect to the rehabilitation of individuals with physical disabilities that result from congenital defects, diseases, or disorders of the neurological, musculoskeletal, cardiovascular, pulmonary, or any other physiological system.
June 10, 1993 — The NIH Revitalization Act of 1993, Public Law 103-43, mandates the NICHD to do the following: 1) establish contraception research centers to improve methods of contraception; establish infertility research centers to improve methods of diagnosis and treatment of infertility; and establish an educational loan repayment program for extramural and intramural health professionals who agree to conduct contraception or infertility research; 2) establish and maintain an intramural laboratory and clinical research program in obstetrics and gynecology within the Institute; 3) establish and support a program of Child Health Research Centers; and 4) undertake a national prospective, longitudinal study of adolescent health and well-being.
October 17, 2000 — President Clinton signs Public Law 106-310, the Children's Health Act, which designates the NICHD as the lead organization on a number of research initiatives, including establishment of a pediatric research initiative, expansion of autism-related and Fragile X syndrome research activities, and authorization for the NICHD to lead other federal agencies in conducting a national longitudinal study of environmental influences on child health.
December 18, 2001 — President George W. Bush signs Public Law 107-84, the Muscular Dystrophy Community Assistance, Research and Education Amendments of 2001, which directs the NIH Director, in coordination with the National Institute of Neurological Disorders and Stroke, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, and the NICHD, to expand research activities at NIH pertaining to various types of muscular dystrophy. This expansion is to include the formation of an inter-agency coordinating committee and the establishment of centers of excellence to conduct research. The law also mandates a contract with the Institute of Medicine to study and report on the impact of and need for centers of excellence at the NIH.
January 4, 2002 — The Best Pharmaceuticals for Children Act (Public Law 107-109) seeks to improve the safety and efficacy of pharmaceuticals for children. The law authorizes funding for the NIH to conduct testing of drugs already on the market, including at federally funded facilities, such as the NICHD's Pediatric Pharmacology Research Units.
January 8, 2002 — President Bush signs the No Child Left Behind Act (Public Law 107-110). Among the education legislation's many provisions is authorization for programs that build upon the reading readiness research funded by the NICHD, as well as on findings from the National Reading Panel, established and supported by the NICHD.
December 3, 2003 — The President authorizes the Pediatric Research Equity Act (Public Law 108-155), which codifies a policy of requiring pharmaceutical companies to test new drugs in pediatric populations, if the drugs are likely to be used to treat children, and to provide the data to the federal government. This law complements the Best Pharmaceuticals for Children Act, in which the NICHD plays a central role.
December 3, 2004 — The President signs the Individuals with Disabilities Education Improvement Act (IDEA) of 2004 (Public Law 108-446). Among the many provisions in this reauthorization of IDEA activities, the Act also amends the section of the Children's Health Act of 2000 specific to the National Children's Study. This amendment requires the U.S. Department of Education to be formally included as a partner in planning and implementing the Study; the Department is already a member of the federal consortium that leads the Study, but was not named in the original legislation. The Act also requires that the National Children's Study comply with federal education law concerning the use of school records for research purposes.
December 9, 2006 — The Prematurity Research Expansion and Education for Mothers who deliver Infants Early Act ("PREEMIE") passes, with provisions authorizing an Interagency Coordinating Council on Prematurity and Low Birthweight, and directing the U.S. Surgeon General to convene a meeting on preterm birth. The NICHD will assist the Surgeon General's Office in planning and holding the meeting in June 2008.
December 19, 2006 — The Combating Autism Act becomes law, requiring the NIH and other federal agencies to expand their activities related to research on possible causes, diagnostics, and treatments for autism spectrum disorders. The Act also requires the NIH to develop and update an annual strategic plan for autism-related research, expand the Autism Centers of Excellence, and reauthorize the Interagency Autism Coordinating Committee.
September 27, 2007 — Best Pharmaceuticals for Children/Pediatric Devices Act becomes law as part of the Food and Drug Administration Amendments Act of 2007. The Act reauthorizes the Best Pharmaceuticals for Children Act, extending additional patent exclusivity for drugs that are being tested for pediatric use, and makes improvements to the research program being supported by NICHD. The Act establishes a new program, for Pediatric Medical Device Safety and Improvement, requiring NIH to collaborate with the FDA and the Agency for Healthcare Research and Quality to develop a research plan for expanding medical device research and development focused on devices for children. NICHD is leading the trans-NIH effort to develop the research plan for studies of pediatric medical devices.
December 21, 2007 — The President signs the bill renaming the NICHD as the "Eunice Kennedy Shriver National Institute of Child Health and Human Development." The bill and renaming honors Mrs. Shriver's work in both supporting the establishment of the Institute and her ongoing efforts on behalf of the intellectually disabled and lauds the NICHD's research efforts in reducing SIDS, maternal HIV transmission, and development of vaccines, among others.
April 24, 2008 — The Newborn Screening Saves Lives Act (P.L. 110-204) renames the NICHD's program as the Hunter Kelly Newborn Screening Research Program after the son of National Football League Pro Football Hall-of-Fame quarterback Jim Kelly and his wife Jill; Hunter Kelly had Krabbe disease, one of the classic leukodystrophies (a rare, degenerative, fatal muscular and nervous-system disease), and died at age eight in 2005. The Act also authorizes the NIH, through the NICHD, to develop systematic methods for identifying additional conditions for newborn screening, develop and test innovative treatments and strategies to improve outcomes, educate providers about newborn screening, create and implement communication systems for newborn screening, and sponsor research and research training programs.
April 28, 2008 — The Traumatic Brain Injury (TBI) Act (P.L. 110-206) becomes law, reauthorizing funding for TBI research, treatment, surveillance, and education activities through 2012 at the NIH, CDC, and HRSA. Among its provisions, the Act requires a report to Congress on activities that can improve the collection and dissemination of epidemiological studies on the incidence and prevalence of TBI in persons formerly in the military and charges the NIH and CDC to conduct studies identifying common therapeutic interventions for TBI rehabilitation and those that can prevent secondary neurologic conditions, and to develop practice guidelines for the rehabilitation of TBI.
October 8, 2008 — ThePaul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2008 (P.L. 110-361) become law. The Act names the muscular dystrophy centers of excellence (several of which are funded by NICHD) as the Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers. In addition, the Muscular Dystrophy Interagency Coordinating Committee, on which the NICHD Director sits, is authorized to give special consideration to enhance the clinical research infrastructure to test emerging therapies for the various forms of muscular dystrophy. The same day, Congress signs the Prenatally and Postnatally Diagnosed Conditions Act (P.L. 110-374) to increase the provision of information, referrals, and support services to families of patients who receive a diagnosis of Down syndrome or other prenatally or postnatally (up to one year after birth) diagnosed conditions. The Act also requires HHS to support coordination of "up-to-date and evidence-based" information regarding such services.
March 30, 2009 — The President signs the Omnibus Public Land Management Act of 2009 (P.L. 111-11), which includes the Christopher and Dana Reeve Paralysis Act authorizing the NIH to coordinate paralysis research and rehabilitation activities across the Institutes, to establish research consortia and name them for Christopher and Dana Reeve, and to award grants for multicenter networks of clinical sites that will collaborate to design clinical rehabilitation intervention protocols and measures of outcomes on one or more forms of paralysis.
July 9, 2012 — The President signs the Food and Drug Administration Safety and Innovation Act (P.L. 112-144). Among its provisions, the Act extends the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA) until 2017. The Act also establishes measures to improve both the BPCA and PREA in terms of their ability to encourage and support pediatric research.
November 27, 2013 — The President signs the Prematurity Research Expansion and Education for Mothers who deliver Infants Early (PREEMIE) Reauthorization Act (P.L. 113-55). One component of the legislation reauthorizes programs related to reducing preterm birth and infant mortality; another component supports the establishment of a National Pediatric Research Network, with preference to be given to grantees that focus on pediatric “rare” diseases.
April 3, 2014 — The President signs the Gabriella Miller Kids First Research Act (P.L. 113-94), which eliminates taxpayer financing for presidential campaigns and authorizes a “10 Year Pediatric Research Initiative Fund” of $12.6 million through FY 2023 to be appropriated to the NIH Common Fund to support pediatric research activities.
August 8, 2014 — The President signs the Autism Collaboration, Accountability, Research, Education and Support Act (Autism CARES) of 2014 (P.L. 113-490), which reauthorizes federal autism-related programs. Among other things, it requires the HHS Secretary to designate an official to establish and oversee national autism spectrum disorder research, services, and support activities, and revises responsibilities and members of the Interagency Autism Coordinating Committee including reports to the President and Congress.
September 26, 2014 — The President signs the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research, and Education Amendments of 2008 (P.L. 113-166), which reauthorizes and amends the muscular dystrophy research program at the NIH. Among other things, the legislation expands the range of forms of muscular dystrophy and continues and expands the inter-agency Muscular Dystrophy Coordinating Committee.
November 26, 2014 — The President Signs the Traumatic Brain Injury Reauthorization Act (P.L. 113-196), amending the Public Health Service Act to reauthorize federal prevention, surveillance, and registry programs relating to traumatic brain injury through 2019. The legislation requires the Secretary to improve coordination of federal activities and to develop a traumatic brain injury coordination plan within one year of enactment. It also requires the Director of CDC, in consultation with the Director of NIH, to conduct a review of the scientific evidence related to brain injury management in children, identifying ongoing and potential opportunities for further research.
December 18, 2014 — The President signs the Newborn Screening Saves Lives Reauthorization Act of 2014 (P.L. 113-240), reauthorizing activities relating to newborn screening, including NICHD’s Hunter Kelly Newborn Screening program. Of particular importance, the legislation requires federally funded research on newborn dried blood spots to be considered research on human subjects (which requires the informed consent of the subject), and eliminates the ability of an institutional review board to waive informed consent requirements for research on newborn dried blood spots.
December 18, 2014 — The President signs the Sudden Unexpected Death Data Enhancement and Awareness Act (P.S. 113-236), amending the Public Health Service Act to require the Secretary of HHS to continue and report on activities relating to stillbirth, sudden unexpected infant death, and sudden unexpected death in childhood. The legislation requires the CDC to provide for collection of epidemiologic information on stillbirths and periodically update standard protocols for data collection. It also requires the death scene protocol to include the infant’s sleep position and sleep environment.
Biographical Sketch of NICHD Director Alan E. Guttmacher, M.D.
Alan E. Guttmacher, M.D., assumed the duties of NICHD Acting Director on December 1, 2009, and was appointed as the NICHD Director on July 22, 2010.
A pediatrician and medical geneticist, Dr. Guttmacher came to the NIH in 1999 to work at the National Human Genome Research Institute (NHGRI), where he served in a number of roles, including Deputy Director and Acting Director,thus overseeing that Institute's efforts to advance genome research, integrate that research into health care, and explore the ethical, legal, and social implications of human genomics.
Previously, he worked at the University of Vermont, where he directed the Vermont Regional Genetics Center and Pregnancy Risk Information Service, the Vermont Newborn Screening Program, and the Vermont Cancer Center’s Familial Cancer Program. He also founded Vermont’s only pediatric intensive care unit, and was the principal investigator for an NIH-supported initiative that was the nation’s first statewide effort to involve the general public in discussion of the Human Genome Project’s ethical, legal, and social implications. Throughout all of these activities, Dr. Guttmacher conducted research, taught, and had a busy practice in clinical genetics. His own research has centered around understanding the biology and natural history of rare diseases, particularly hereditary hemorrhagic telangiectasia (HHT), and finding ways to improve the well-being of people with them.
A graduate of Harvard College and of Harvard Medical School, Dr. Guttmacher completed an internship and residency in pediatrics and a fellowship in medical genetics at Harvard and Children’s Hospital of Boston. He is a member of the Institute of Medicine.
Directors of NICHD
|Name||In Office from||To|
|Robert A. Aldrich||March 1, 1963||October 1964|
|Donald Harting||July 8, 1965||1966|
|Gerald D. LaVeck||October 9, 1966||September 1, 1973|
|Gilbert L. Woodside (Acting)||September 1, 1973||September 1, 1974|
|Norman Kretchmer||September 1, 1974||September 30, 1981|
|Betty H. Pickett (Acting)||September 30, 1981||June 30, 1982|
|Mortimer B. Lipsett||July 1, 1982||January 7, 1985|
|Duane Alexander||February 5, 1986||September 30, 2009|
|Susan Shurin (Acting)||October 1, 2009||November 30, 2009|
|Alan Guttmacher (Acting)||December 1, 2009||July 21, 2010|
|Alan Guttmacher||July 22, 2010||Present|
In 2012, as the NICHD marked its 50th anniversary, the Institute made a number of changes to its organizational structure to streamline activities and accelerate the exchange of scientific ideas. The reorganization was informed by an extensive scientific Vision process, in which more than 700 leaders from the scientific, research, patient, and consumer communities, along with NICHD staff, identified major scientific opportunities in the next decade across the Institute’s mission.
Under this reorganization, the Institute phased out the Center for Population Research, Center for Research for Mothers and Children, and Center for Developmental Biology and Perinatal Medicine and created a single Division of Extramural Research. The new Division includes the 12 existing scientific Branches and two new scientific Branches, as well as other organization units related to extramural research activities. The Associate Director for Extramural Research—a newly established leadership position within the NICHD—leads the Division.
Scientific program components of the Division of Extramural Research include:
- Child Development and Behavior Branch
- Contraceptive Discovery and Development Branch
- Developmental Biology and Structural Variation Branch
- Fertility and Infertility Branch
- Gynecologic Health and Disease Branch
- Intellectual and Developmental Disabilities Branch
- Maternal and Pediatric Infectious Disease Branch
- Obstetric and Pediatric Pharmacology and Therapeutics Branch
- Pediatric Growth and Nutrition Branch
- Pediatric Trauma and Critical Illness Branch
- Population Dynamics Branch
- Pregnancy and Perinatology Branch
The reorganization maintained the National Center for Medical Rehabilitation Research, an extramural entity established by Congress within the NICHD in 1991.
The NICHD’s intramural research program includes two Divisions that provide expertise ranging from biostatistics, epidemiology, computer sciences, and prevention research to biological and neurobiological, medical, and behavioral aspects of normal and abnormal human development. Components of these Divisions include:
- Division of Intramural Population Health Research
- Office of the Director
- Biostatistics and Bioinformatics Branch
- Epidemiology Branch
- Health Behavior Branch
- Division of Intramural Research (DIR)
- Office of the Scientific Director
- Cell Biology and Metabolism Program
- Molecular Medicine Program
- Program in Cellular Regulation and Metabolism
- Program in Developmental Endocrinology and Genetics
- Program in Developmental Neuroscience
- Program in Genomics of Differentiation
- Program in Perinatal Research and Obstetrics
- Program in Physical Biology
- Program in Reproductive and Adult Endocrinology
- Program on Pediatric Imaging and Tissue Science
Visit http://www.nichd.nih.gov/about/org/Pages/index.aspx for a complete listing of the Institute’s organizational units and descriptions of their missions and activities.
On December 5, 2012, the NICHD released the Scientific Vision: The Next Decade, the culmination of a collaborative process that began in 2011 to identify the most promising scientific opportunities for the Institute and the research community to pursue over the next decade. For information about the Vision process, discussions, and participants, visit http://www.nichd.nih.gov/vision. The scientific Vision provides a framework for research built upon the tenets described below.
Beginning at the cellular and molecular level, developmental biology is concerned with understanding such key processes as how embryos begin, form limbs and organs, and develop into mature organisms. The goal of this research area is to predict, identify and ameliorate the steps leading to birth defects and other variations in human structure and functioning. Advances in genomics — the study of the entire genome — offer new ways to study development and even to reprogram cells to develop new organs and tissues.
Developmental Origins of Health and Disease
Complex interactions between biological and environmental factors, starting before conception, influence development across the life span of the individual and future generations. Knowledge of these factors promises a future in which clinicians will be able to predict, and act to prevent, treat, or reverse disease.
Pregnancy and Pregnancy Outcomes
Millions throughout the world are at risk for such complications of pregnancy as gestational diabetes, hypertension, preterm birth, and stillbirth. To understand the problems that arise during pregnancy, research is needed, first, to understand the normal progression of a pregnancy.
Reproductive health depends on the ability to control fertility through a range of effective male and female contraceptive options and to access to effective assisted reproduction techniques when they are needed.
Behavior and Cognition
Behavioral factors can promote positive health outcomes or increase the risk of adverse ones. Cognition is a lifelong process that underlies human functioning. Improved understanding of behavior and cognition could ameliorate developmental conditions or help individuals interact with the world in ways that can sustain or improve their health and well-being.
Plasticity and Rehabilitation
Plasticity refers to the mechanisms underlying adaptive or maladaptive change to cells, organs, and tissues. Understanding plasticity is essential for understanding human development and rehabilitation. Once thought to occur only in early life, plasticity has now been shown to occur across the lifespan. The challenge is to build upon this understanding to improve functioning after injury, other forms of trauma, and disease.
Understanding how the forces that shape populations can influence health, together with understanding why some populations with similar genetic endowments and environmental exposures experience diverse health outcomes, can inform the development of effective population- and community-based interventions and can help identify factors that can eliminate health disparities.
Conduct of Science
The NICHD's scientific Visioning process identified many promising opportunities in all areas of biomedical research, and was not limited to the institute's mission. One avenue to success is increased transdisciplinary science — collaboration and cooperation among researchers in diverse fields. Another involves new approaches to utilizing the vast amount of scientific information that will result from complex long term studies and repositories housing lifetimes of biological specimens.
The scientific Vision will form the basis for an Institute-wide strategic planning process that will identify specific research directions and activities for the NICHD for the next 5 years.
For more information on the NICHD, its mission, its components, and its research, please visit http://www.nichd.nih.gov.
Appropriations: Grants and Direct Operations (Amounts in thousands of dollars)
|Fiscal Year||Total Grants $||Direct Operations1 $||Total $|
1 Includes R&D contracts,
intramural research, and research management support.
2 Excludes enacted administrative reduction of $338.
3 Reflects 1% transfers by HHS and NIH noncomparable to fiscal year 2000.
4 Updated since the 1999 NIH Almanac.
5 Includes comparable adjustments for program transfers as reflected in the FY 2009 Congressional Justification.
6 Excludes American Recovery and Reinvestment Act funds.
7 Reflects 1% transfers by HHS and NIH.
8 Sequestration required NIH to cut 5 percent of its fiscal year 2013 budget.