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Eunice Kennedy Shriver National Institute of Child Health and Human Development

Mission | Important Events | Legislative Chronology | Director | Organization

Mission

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.

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.

1970—The NICHD's Epidemiology and Biometry Branch, created during the Institute's second reorganization in 1967, becomes the Epidemiology and Biometry Research Program. The change allows the Program to conduct epidemiologic, behavioral, and biometric studies relating to reproductive, maternal, and child health.

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.

1997—The NICHD launches the Milk Matters calcium education campaign, designed to educate people about the importance of getting enough calcium during the childhood and teenage years to help prevent osteoporosis and fragile bones in adulthood.

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 will 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.

April 2001—A typhoid vaccine developed by NICHD scientists showed a 91.5% effectiveness rate, the highest reported for any typhoid vaccine, in clinical trials done in Vietnam. More than 16 million people worldwide are affected by typhoid every year. This highly effective vaccine could prevent the more than 600,000 deaths that result annually from typhoid fever around the world.

February 2002—NICHD scientists, in conjunction with the biologics firm Nabi, develop the first vaccine against Staphylococcus aureus, a major cause of infection and death in hospital patients. S. aureus—which can cause illness ranging from minor skin infections to life-threatening pneumonia, meningitis, and infections of the heart—attacks people whose immune systems are compromised. This new vaccine provides a powerful new way to prevent these infections, a finding which could save thousands of lives every year.

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, 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 U.S. Environmental Protection Agency—will be the largest and most comprehensive of its kind.

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.

January 2005—NICHD-supported researchers identify a substance—placental growth factor (PlGF)—in the urine of pregnant women that can be measured to predict the later development of preeclampsia, the leading cause of maternal and fetal death in the United States. This finding sets the stage for the development of a test to screen women for risk of preeclampsia. Such foreknowledge will help physicians to better care for the women, possibly taking steps to prolong the pregnancy to allow the fetus to develop more, while closely monitoring them for signs that the fetus should be delivered, even prematurely, if necessary.

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. (Please see the Division of Intramural Research (DIR)section of this document for more information.)

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.

September 2007—The National Children's Study, led by the NICHD and a consortium of federal agencies, awards contracts to 22 new study centers, which will manage participant recruitment and data collection in 26 additional communities across the United States. Congress appropriated $69 million in fiscal year 2007 for the new Study centers and the Study's initial phase. The National Children's Study is the largest study to be conducted on the effects of environmental and genetic factors on child and human health in the United States.

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.

April 2008—The NIH announces recipients of grants from the Autism Centers of Excellence (ACE) program. These grants will support studies covering a broad range of autism research areas, including early brain development and functioning, social interactions in infants, rare genetic variants and mutations, associations between autism-related genes and physical traits, possible environmental risk factors and biomarkers, and a potential new treatment. The ACE program encompasses research centers and research networks, which both rely on collaborations among teams of autism researchers working together on a single research question.

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.

September 2009—After more than 40 years with the NICHD, Director Duane Alexander, M.D. announces his departure. Dr. Alexander will serve as a senior scientific advisor to the Director of the NIH's Fogarty International Center on the NIH's role in a White House initiative to reduce maternal and infant mortality and morbidity in the developing world. Dr. Alexander's tenure at the NICHD saw a myriad of scientific accomplishments, ranging from the development of a vaccine against Hemophilus influenzae type b (Hib) meningitis, thereby eliminating it as a major cause of acquired intellectual and developmental disability, to the dramatic decrease in the rate of mother-to-child HIV transmission in the U.S., from 27 percent to less than 2 percent. Susan Shurin, M.D., Deputy Director of the National Heart, Lung, and Blood Institute (NHLBI), becomes Acting NICHD Director on October 1, 2009.

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.

December 1, 2009—The NIH Director appoints Alan E. Guttmacher, M.D. as the Acting Director of the NICHD. Dr. Guttmacher replaces Susan B. Shurin, M.D. Dr. Shurin, Deputy Director of NHLBI, returns to that Institute to become its Acting Director. Dr. Guttmacher is the Deputy Director of the National Human Genome Research Institute (NHGRI) and served as that Institute's Acting Director from 2008 to 2009. As Deputy and Acting Director of NHGRI, Dr. Guttmacher oversaw that Institute's efforts to advance genome research, integrate the benefits of genome research into health care, and explore the ethical, legal, and social implications of human genomics.

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—The Paul 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.

Biographical Sketch of NICHD Acting Director Alan E. Guttmacher, M.D.

Alan E. Guttmacher, M.D., assumed the duties of NICHD Acting Director on December 1, 2009. 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 has served in a number of roles, including Deputy Director since 2002, and Acting Director from 2008 to November 30, 2009. In those roles, he oversaw 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.

Born in Baltimore, Maryland, Dr. Guttmacher explains that he went into medicine because, as a middle school teacher, he became interested in the etiology and treatment of pediatric learning disorders. He received an A.B. degree from Harvard College in 1972 and an M.D. from Harvard Medical School in 1981. After completing his internship and residency in pediatrics at Children's Hospital Boston, Dr. Guttmacher earned a two-year National Research Service Award from the U.S. Public Health Service as a fellow in medical genetics at Children's Hospital Boston and Harvard Medical School.

Dr. Guttmacher became director of the Vermont Regional Genetics Center at the University of Vermont College of Medicine in 1987. While there, he launched a series of public health genetics programs, directed the Vermont Cancer Center's Familial Cancer Program and the Vermont Newborn Screening Program, and founded Vermont's only pediatric intensive care unit. He also directed the nation's first statewide effort to involve the general public in discussion of the Human Genome Project's (HGP) ethical, legal, and social implications—an initiative funded by NIH. He also developed a busy practice in clinical genetics, conducted research, and was a tenured associate professor of pediatrics and medicine at the University of Vermont.

In 1999, he joined the NHGRI as Senior Clinical Advisor to the Director. In that role, Dr. Guttmacher established a dialogue with health professionals and the public about the health and societal implications of the HGP. He played a pivotal role in guiding the establishment of the National Coalition for Health professional Education in Genetics, a non-profit coalition that promotes health-professional education and access to information about advances in human genetics. He has given hundreds of talks to physicians, consumer groups, students and the lay public about genetics and its impact on health, health care and society. Among his research interests have been dysmorphology, syndrome identification and delineation, and hereditary hemorrhagic telangiectasia.

Dr. Guttmacher became Deputy Director of NHGRI in 2002. In 2003, he and Dr. Francis Collins (now NIH Director) co-edited Genomic Medicine, a series about the application of advances in genomics to medical care for The New England Journal of Medicine. He will be co-editing another series on genomics in medicine that will appear in the same journal starting in 2010. Dr. Guttmacher also oversaw the NIH's involvement in the U.S. Surgeon General's Family History Initiative, an effort to encourage all Americans to learn about and use their families' health histories to promote personal health and prevent disease. He previously served in volunteer leadership positions for several regional and national nonprofit organizations involved with reproductive health. He is a Fellow of the American Academy of Pediatrics, a Fellow of the American College of Medical Genetics, and 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

Organization

The NICHD's major components include both extramural programs, which support research via grants and contracts, and intramural programs, which conduct research at various laboratories, branches, units, and sections. The Division of Scientific Review provides additional support for NICHD activities. Descriptions of the major components and their functions are outlined below.

For more information on the NICHD, its mission, its components, and its research, please visit www.nichd.nih.gov.

Center for Population Research (CPR)

The CPR is the federal government's focal point for population research. Through grants and contracts, the Center supports: fundamental biomedical research on reproductive processes that influence human fertility and infertility; development of better methods for regulating fertility and for preventing the spread of sexually transmitted diseases, including HIV; evaluation of the safety and effectiveness of contraceptive methods now in use; and behavioral and social science research on the reproductive behavior of individuals, sexual transmission of HIV, and the causes and consequences of population change.

The Center also supports an extensive training program for individuals interested in all aspects of reproduction and population research through its 3 branches:

  • Contraception and Reproductive Health Branch
  • Demographic and Behavioral Sciences Branch
  • Reproductive Sciences Branch

Center for Developmental Biology and Perinatal Medicine (CDBPM)

The CDBPM provides support for basic, clinical, and applied research and research training in maternal, fetal, and infant health, and disorders of human development. The Center seeks to advance fundamental and clinical knowledge about maternal health and problems of child development, such as preterm birth, mental retardation and developmental disabilities, congenital and genetic disorders, fetal and infant morbidity and mortality (including fetal growth restriction, stillbirth, SIDS, fetal therapy, and disorders of the high risk neonate), and other conditions. Areas of emphasis include, but are not limited to: biology of high-risk pregnancies and premature birth; low birth weight; mental retardation and developmental disabilities, including autism and fragile X syndrome; heritable diseases; birth defects; prenatal and neonatal screening; immunodeficiencies; and mechanisms and factors in teratogenesis and developmental biology, including basic studies of processes in embryonic development and the development and use of animal models to study developmental processes and genetic diseases.

The Center achieves its mission through the efforts of 3 branches:

  • Developmental Biology, Genetics, and Teratology Branch
  • Intellectual and Developmental Disabilities Branch
  • Pregnancy and Perinatology Branch

Center for Research for Mothers and Children (CRMC)

The CRMC is a major source of research and research training in child health and in the health of mothers. The Center and its programs focus on maximizing growth and development, preventing transmission of HIV/AIDS in various populations, and improving knowledge about children's behavior and behavioral outcomes. Areas of emphasis include, but are not limited to: behavioral, social, and emotional adaptation from infancy through adolescence and early adulthood; learning disabilities; nutrition; endocrine disorders and growth retardation; and preconceptional, prenatal, and postnatal infectious diseases and HIV/AIDS. In addition, the CRMC plays a lead role in the following initiatives: the Global Network for Women's and Children's Health, the activities of the Best Pharmaceuticals Act for Child and Pediatric Pharmacology Research Unit Network, examinations of reading and math outcomes and how to improve them, and accident and injury prevention.

The Center achieves its mission through the efforts of its branches:

  • Endocrinology, Nutrition, and Growth Branch
  • Child Development and Behavior Branch
  • Pediatric, Adolescent, and Maternal AIDS Branch
  • Obstetric and Pediatric Pharmacology Branch

National Center for Medical Rehabilitation Research (NCMRR)

The NCMRR funds research training and projects to develop the scientific knowledge needed to promote the health, productivity, independence, and quality of life for people with disabilities. A primary goal of the Center is to bring the health-related problems of people with disabilities to the attention of the nation's best scientists, to capitalize upon the myriad advances occurring in the biological, behavioral, and engineering sciences.
The NCMRR supports a number of research programs:

  • Behavioral Sciences and Rehabilitation Engineering Technology Program
  • Biological Sciences and Career Development Program
  • Pediatric Critical Care and Rehabilitation Program
  • Traumatic Brain Injury and Stroke Rehabilitation Program
  • Spinal Cord and Musculoskeletal Disorders and Assistive Technology Program

Division of Epidemiology, Statistics, and Prevention Research (DESPR)

DESPR, an intramural research program, provides the Institute with skills in 4 disciplines: biostatistics, epidemiology, computer sciences, and prevention research. DESPR relies solely on contracts—not grants—to fund its research. Within DESPR are 3 branches:

  • Biostatistics & Bioinformatics Branch
  • Epidemiology Branch
  • Prevention Research Branch

In 2001, in response to the Children's Health Act of 2000, DESPR initiated the planning phase of the National Children's Study, a national, longitudinal study of environmental influences on child health. The study, led by a consortium of federal agencies, including HHS (the NICHD and NIEHS within NIH, as well as the Centers for Disease Control and Prevention) and the U.S. Environmental Protection Agency, will span more than 2 decades and will follow approximately 100,000 children. In 2008-2009, the National Children’s Study was moved organizationally to reside within the NICHD Office of the Director.  The Study continues to progress and began recruiting participants in 2009.

Division of Intramural Research (DIR)

The DIR is broadly concerned with the biological and neurobiological, medical, and behavioral aspects of normal and abnormal human development. The Division's clinical research projects admit a limited number of research patients under guidelines established by the Director of the NIH Clinical Center. In addition to clinical research and training programs in the areas of genetics, endocrinology, and maternal-fetal medicine, a diverse range of developmental models are under study in research laboratories and branches. For more information about the DIR, visit http://dir2.nichd.nih.gov/.

At the recommendation of the Blue Ribbon Panel Review and the Board of Scientific Counselors, the DIR reorganized itself from 22 laboratories and branches to 10 Programs along with 3 Branches, 2 Sections, and 3 Core Facilities. The Programs, Branches, Sections, and Core Facilities include the following:

  • Cell Biology and Metabolism Program (CBMP)
  • Program in Cellular Regulation and Metabolism (PCRM)
  • Program in Developmental and Molecular Immunity (PDMI)
  • Program in Developmental Endocrinology and Genetics (PDEGEN)
  • Program in Developmental Neuroscience (PDN)
  • Program in Genomics of Differentiation (PGD)
  • Program in Molecular Medicine (PMM)
  • Program in Perinatal Research and Obstetrics (PPRO)
  • Program in Physical Biology (PPB)
  • Program in Reproductive and Adult Endocrinology (PRAE)
  • Administrative Management Branch (AMB)
  • Bone and Extracellular Matrix Branch (BEMB)
  • Research Animal Management Branch (RAMB)
  • Section on Nervous System Development and Plasticity (SNSDP)
  • Section on Physical Biochemistry (SPB)
  • Imaging Core
  • Mass Spectrometry Core
  • Unit on Biologic Computation (UBC) Core

Division of Scientific Review (DSR)

The DSR is responsible for a broad range of functions related to the review of grant applications for research and training, and of contract proposals for research. The Division also provides policy direction and coordination for planning and conducting initial scientific and technical merit reviews of applications for numerous types of grant applications, including small research grants, program projects, centers, institutional training grants, career development, and conference grants. In addition, the DSR coordinates and conducts the review of grant applications that are received by the NICHD in response to requests for applications, which are published with the aim of fostering work in a research area of particular relevance to the mission of the Institute. The Division also manages the technical evaluation of contract proposals that arrive in response to requests for proposals issued by the Institute.

To review grant applications, the DSR relies on subcommittees of the Child Health and Human Development (CHHD) Initial Review Group (IRG) or, where appropriate, a Special Emphasis Panel that is convened for its expertise in a specific area of science. The CHHD IRG includes subcommittees on the following scientific areas: pediatrics; developmental biology; biobehavioral and behavioral sciences; population sciences; obstetrics and maternal-fetal biology; reproduction, andrology, and gynecology; and function, integration, and rehabilitation sciences. In addition to managing the subcommittees, scientific review administrators also recruit extramural scientists to serve as peer-reviewers while maintaining oversight of all aspects of the peer-review process. Further, Special Emphasis Panels, which are convened as technical evaluation groups, also evaluate contract proposals.

National Institute of Child Health and Human Development—
Appropriations: Grants and Direct Operations
[Amounts in thousands of dollars]

Fiscal Year Total Grants $ Direct Operations1 $ Total $
1964 32,800 1,200 34,000
1965 38,906 3,790 42,695
1966 49,725 5,299 55,024
1967 55,710 9,212 64,922
1968 56,795 11,826 68,621
1969 57,363 15,763 73,126
1970 59,135 18,057 77,192
1971 64,151 30,609 94,760
1972 78,356 38,477 116,833
1973 89,114 41,315 130,429
1974 87,955 42,309 130,254
1975 97,848 44,587 142,435
1976 95,518 40,886 136,404
1977 100,717 44,826 145,543
1978 115,471 50,919 166,390
1979 143,951 54,039 197,630
1980 149,052 59,901 208,953
1981 164,233 56,395 220,628
1982 167,221 59,088 226,309
1983 188,948 65,376 254,324
1984 208,511 67,535 276,046
1985 236,547 76,211 312,758
1986 237,299 70,912 308,211
1987 281,413 85,238 366,651
1988 295,537 101,047 396,584
1989 318,567 106,701 425,628
1990 323,156 118,799 441,995
1991 351,031 127,916 478,947
1992 375,522 144,055 518,577
1993 380,059 147,708 527,767
1994 385,700 172,136 554,836
1995 397,494 172,815 570,309
1996 422,865 170,286 592,791
1997 454,374 176,991 631,3652
1998 486,527 185,565 672,0923
1999 551,8454 196,793 748,6384
2000 642,873 214,519 857,392
2001 738,441 237,140 975,581
2002 839,365 271,049 1,110,459
2003 892,243 313,684 1,205,927
2004 906,889 341,088 1,247,977
2005 903,027 359,263 1,262,290
2006 890,228 364,541 1,254,769
2007 898,923 355,221 1,254,1445
2008 898,000 361,439 1,259,439
2009 915,059 377,892 1,292,9516

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.

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This page last reviewed on October 12, 2011

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