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NCBDDD Fiscal Year 2011 Annual Report

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Below is a list of pages from NCBDDD’s Annual Report. You can customize a printed version by selecting the pages you wish to print.

Cover Page
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Table of Contents
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About CDC
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Message from the Director
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Annual Report Cover PageTable of ContentsAbout CDCMessage from the Director
Our Organization
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Our Budget
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FY 2011
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Our State Funding
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Our OrganizationOur BudgetFiscal Year 2011State Funding
Birth Defects
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Birth Defects - Autism
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Birth Defects - Maternal Risk Factors
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Birth Defects - Fetal Alcohol Spectrum Disorders
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Division of Birth Defects and Developmental DisabilitiesMonitoring and Tracking AutismPreventing Birth Defects from Maternal Risk FactorsAlcohol-exposed pregnancies
Birth Defects - Folic Acid
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Birth Defects - Newborn Screening
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Blood Disorders
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Blood Disorders - Preventing Clotting Disorders
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Folic Acid Prevents neural Tube Defects

Newborn ScreeningBlood disordersPrevent Clotting Disorders
Blood Disorders - Sickle Cell Disease and Thalassemia
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Blood Disorders - Hemophilia and Von Willebrand Disease
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Human Development and Disability
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Human Development and Disability - Disparities
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Sickle Cell Disease and ThalassemiaHemophilia and Von Willebrand DiseaseHuman Development and DisabilityObesity
Human Development and Disability - Child Development
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Human Development and Disability - Hearing Loss in Children
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Human Development and Disability - Health Care Access
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Human Development and Disability - Disability Status
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Child DevelopmentHearing lossHealth care Access for People with DisabilitiesDisability Status
10 Years of Service
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Notable Scientific Publications
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Contact Us
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10 Years of ServiceNotable Scientific PublicationsContact Us

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Parent holding child's hand

About Us

The Children's Health Act of 2000, passed by Congress and signed into law by former President Clinton, required the establishment of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC. In April 2001, NCBDDD was officially established. Currently, the center includes three divisions - the Division of Birth Defects and Developmental Disabilities, the Division of Human Development and Disability, and the Division of Blood Disorders.

Helping people live to the fullest

The mission of the CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) is to promote the health of babies, children and adults and enhance the potential for full, productive living. To achieve its mission, our Center works to:

  • Identify the causes of birth defects and developmental disabilities;
  • Help children to develop and reach their full potential; and
  • Promote health and well-being among people of all ages with disabilities, including blood disorders.

We seek to accomplish these goals through research, partnerships, and prevention and education programs.

Birth Defects and Developmental Disabilities
Birth defects affect 1 in 33 babies and are a leading cause of infant death in the United States. More than 5,500 infants die each year because of birth defects. In addition, over 500,000 children are diagnosed with a developmental disability.

CDC and its partners are working to change these figures. With more information, the causes of these birth defects and developmental disabilities can be identified – and action can be taken to protect our children, and to develop new ways to help women have healthy babies.

Three girls laying on the floor with their chins in their hands

Helping Children Reach Their Full Potential
Much of our work focuses on protecting people who are especially vulnerable to health risks – including children. The early years of life (birth to 5 years of age) are critical to a child’s cognitive, social, and emotional development. CDC works with partners to develop public health tools and interventions that give all children the opportunity to reach their full potential.

People with Disabilities

Ten Significant Public Health Achievements ― United States, 2001-2010: Maternal and Infant Health

MMWRThe past decade has seen significant reductions in the number of infants born with NTDs. Improvements in technology and endorsement of a uniform newborn-screening panel of diseases have led to earlier life-saving treatment and intervention for at least 3,400 additional newborns each year and newborn screening for hearing loss increased from 46.5% in 1999 to 96.9% in 2008.


Anyone of any age can have a disability. More than 50 million—which is about 1 in 5—Americans report having some level of disability. People with disabilities need health care and health programs for the same reasons anyone else does – to stay well, active, and a part of the community. To be healthy, people with disabilities require health care that meets their needs as a whole person, not just as a person with a disability.

Our Center works to ensure that people of all different abilities are able to live their life to the fullest. Our work focuses on promoting the health of people with disabilities, and preventing complications or other health conditions secondary to a person’s disability.

Protecting the Health of People with Blood Disorders
Blood disorders - such as sickle cell disease, anemia, and hemophilia - affect millions of people each year in the United States, cutting across the boundaries of age, race, sex, and socioeconomic status. Men, women, and children of all backgrounds live with the complications associated with these conditions, many of which are painful and potentially life-threatening. With proper preventive actions and early intervention, many of these disorders and their complications could, to a large extent, be eliminated. We are dedicated to reducing the public health burden resulting from these conditions by contributing to a better understanding of blood disorders and their complications; ensuring that prevention programs are developed, implemented, and evaluated; ensuring that information is accessible to consumers and health care providers; and encouraging action to improve the quality of life for people living with or affected by these conditions.

From beginning to end, a better life for all
Grandmother, mother, and daughter sitting togetherIt might be the greatest wish all people have or themselves and their loved ones: a healthy, happy life. Often, when one’s mind and body work perfectly, good health is taken for granted. Yet millions of people live every day with some form of disability, facing limitations in daily life activities. This includes infants and children with birth defects, genetic conditions, blood disorders, and developmental disabilities such as intellectual disabilities, autism, cerebral palsy, muscular dystrophy, and vision problems. These children might have challenges as they grow and learn about life, and often face more health problems as they grow older.

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Message from the Director

  • Each year, about 130,000 babies are born with a birth defect.
  • More than 5,500 of these babies die in their first year of life, making birth defects a leading cause of infant death in the United States.
  • About 13 percent of U.S. children younger than 18 years of age have a developmental disability.
  • Approximately 1 in 5 people in the United States has some type of disability.
  • Complications from deep vein thrombosis (DVT) kill more people each year than breast cancer, motor vehicle accidents, and HIV combined.

Coleen A. Boyle, PhD, MSHygThese statistics are alarming and underscore the burden these conditions place on individuals and families living with birth defects, disabilities, or blood disorders. At NCBDDD, we have worked with partners and experts in the fields of birth defects, disabilities, and blood disorders to develop prevention strategies addressing these conditions and improve the health of millions. We translate science into action to provide credible health information to consumers, health care professionals, and policymakers to help improve the lives of children and adults.

The year 2011 marks 10 years of service for us at NCBDDD, and we will be celebrating a decade of helping to promote the health of babies, children, and adults living with birth defects, disabilities, and blood disorders. Our dedicated partners, researchers, scientists, and public health experts strive to identify the risk factors and causes of these conditions to enhance the potential for full, productive living for many in these most vulnerable populations.

As we enter the next decade of service, we look forward to working with our partners to advance the science and address our current strategic priorities of:

  • Preventing major birth defects and poor infant outcomes attributable to maternal medical and lifestyle risk factors;
  • Preventing death and disability associated with deep vein thrombosis/pulmonary embolism (DVT/PE); and
  • Reducing disparities in obesity and other health indicators in children, youth, and adults with disabilities.

As the director of NCBDDD, I am proud to celebrate 10 years of continued progress in the pursuit of improved programs, research, and knowledge for the millions of Americans who live with birth defects, disabilities, and blood disorders. Though our work is far from over, the foundation we have built strengthens our quest for a better tomorrow.


Coleen A. Boyle, PhD, MSHyg
Director, NCBDDD
Centers for Disease Control and Prevention

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Our Strategic Plan Priorities

A boy holding his pregnant mother's hands

As the National Center on Birth Defects and Developmental Disabilities (NCBDDD) begins its second decade, we thought an in-depth reflection of what we have accomplished, how we have operated, and what we want to accomplish in the next few years was in order. This strategic planning process has allowed us to accomplish this work, and most importantly, to identify promising new areas ripe for active engagement. In creating this plan, we identified our priorities by focusing on issues that share these characteristics:

  • The magnitude of the problem is known and significant.

  • Opportunities for prevention, intervention and improvement are present.

  • Several conditions can be improved based on evidence-based interventions and strategies.

  • Disparity reduction/amelioration is a central aspect of what we work to accomplish.

  • The priorities are reinforced or supported by CDC-wide priorities, and clearly fit within our Center’s mandate.

  • The priorities build on previous work or known scientific evidence.

Our strategic planning discussions confirmed that, in carrying out our work, NCBDDD strives to:

  • Characterize the problem, incidence, prevalence, and distribution of our Center’s priority health conditions to inform public health research, priority setting and program monitoring;

  • Conduct epidemiological research to understand the major modifiable risk factors in order to develop intervention/prevention programs and policies; and

  • Develop, evaluate and disseminate effective programs and policies for adoption by global, national, state and local organizations.

Success in these population-based activities will result in:

  • Prevention of birth defects and developmental disabilities;

  • Health promotion and inclusion of people with disabilities;

  • Prevention of chronic disease and subsequent mortality in people with our targeted conditions;

  • Effective population level management of a number of existing conditions including blood disorders; and,

  • Preparedness for disasters and other potential catastrophic health events.

A boy on his dad's shoulders

Center Priorities

Priority 1: Prevent major birth defects attributable to maternal risk factors.

Priority 2: Enhance tracking and research of autism spectrum disorders to monitor changes in occurrence and contributing risk factors.

Priority 3: Prevent death and disability associated with deep vein thrombosis/pulmonary embolism.

Priority 4: Preventing and controlling complications of sickle cell disease.

Priority 5: Reduce disparities in obesity and other health indicators in children, youth and adults with disabilities.

Division Priorities

Division of Birth Defects and Developmental Disabilities

Priority 1: Enhance surveillance and research for autism and other developmental disabilities to monitor changes in prevalence and contributing risk factors, and better inform prevention policy and programs.

Priority 2: Prevent congenital heart defects and other major birth defects associated with obesity, diabetes, and medications.

Priority 3: Prevent alcohol-exposed pregnancy among reproductive age women to prevent fetal alcohol syndrome and other adverse effects of prenatal alcohol exposure.

Priority 4: Eliminate folic acid-preventable neural tube defects in the United States and globally.

Priority 5: Enhance the quality and usefulness of newborn screening data and programs.

Division of Blood Disorders

A wife and her husbandPriority 1: Prevent clotting disorders – deep vein thrombosis and pulmonary embolism.

Priority 2: Prevent and control complications resulting from hemoglobinopathies, with a focus on Sickle Cell Disease and thalassemia.

Priority 3: Prevent and control complications resulting from bleeding disorders such as hemophilia and von Willebrand Disease.

Division of Human Development and Disability

Priority 1: Reduce disparity in obesity and other health indicators in children, youth and adults with disabilities.

Priority 2: Improve developmental outcomes of all children.

Priority 3: Ensure that all newborns are screened and assessed for hearing loss and receive appropriate intervention according to established guidelines.

Priority 4: Identify and reduce disparities in health care for persons with disabilities.

Priority 5: Incorporate disability status as a demographic variable into all relevant CDC surveys, policies and practices.