National Center on Birth Defects and Developmental Disabilities NCBDDD

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National Center on Birth Defects and
Developmental Disabilities (NCBDDD)

• Established in Oct. 2000 by The Childrens Health
  Act of 2000 (Public Law 106-310)
• Created at CDC in April, 2001
• Reauthorized in Dec. 2003 by the Birth Defects
  and Developmental Disabilities Prevention Act of
  2003 (Pubic law 108-151)
• Today, NCBDDD has a cross-disciplinary staff of
  nearly150 FTEs and contractors, interns, and
  students.

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NCBDDDs Mission

• Promoting the health of babies, children, and
  adults, and enhancing the potential for full
  productive living

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National Center on Birth Defects and
Developmental Disabilities Budget Summary FY
2003
Cross-cutting issues
Hereditary Blood Disorders
Birth defects and Developmental disabilities
Disabilities and health
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NCBDDD What we do

• Identify the causes of birth defects and
  developmental disabilities
• Help children develop and reach their full
  potential
• Promote health and well-being among people of all
  ages with disabilities

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Our Divisions.

• Birth Defects and Developmental Disabilities
• Human Development and Disability
• Hereditary Blood Disorders

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Division of Birth Defects and Developmental
Disabilities

• Identifies causes of birth defects and
  developmental disabilities
• Prevents birth defects and developmental
  disabilities
• Lessens morbidity and saves lives
• Assists individuals, families, providers, and
  communities worldwide

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Update of Recent ActivitiesBirth Defects
Cooperative Agreements for Birth Defects
Activities
Washington
Maine
Montana
Vermont
Minnesota
North Dakota
Michigan
New Hampshire
Oregon
Wisconsin
Massachusetts
Idaho
South Dakota
New York
Wyoming
Michigan
Rhode Island
Connecticut
Pennsylvania
Nebraska
New Jersey
Iowa
Nevada
Ohio
DC
Indiana
Delaware
Illinois
Utah
Maryland
West Virginia
Colorado
California
Virginia
Kansas
Missouri
Kentucky
North Carolina
Tennessee
Arizona
Oklahoma
South Carolina
New Mexico
Arkansas
2002-2005 Awardees 2003-2008 Awardees Centers for
Birth Defects Research and Prevention
Mississippi
Georgia
Alabama
Texas
Florida
Louisiana
Alaska
U.S. Virgin Islands
Hawaii
Puerto Rico
Guam
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Birth Defects State Programs Accomplishments

• 37 states have monitoring programs
• Improving timeliness and quality of data
• Assists families with NTD-affected pregnancies
• Implement prevention and intervention projects
• Refer children to services or follow-up

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Other BDDD Birth Defects Activities

• Collaboration with China
• Congenital heart defects epidemiology
• Study of increasing rates of gastroschisis
• Survival and prognostic factors for children with
  Down syndrome
• Air pollution and birth defects

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Folic AcidA Prevention Program

• Research proved that the vitamin can prevent
  spina bifida and anencephaly
• Worked for fortification of enriched grain
  products
• Fortification alone is not sufficient,
  supplements needed before pregnancy
• Now educational campaign underway
• Partnerships critical to success.

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CDC Funded FAS Projects
Washington
Maine
Montana
Vermont
Minnesota
North Dakota
Michigan
Oregon
New Hampshire
Wisconsin
South Dakota
Massachusetts
Idaho
New York
Wyoming
Michigan
Rhode Island
Connecticut
Pennsylvania
Iowa
Nebraska
New Jersey
Nevada
Ohio
DC
Indiana
Delaware
Illinois
Utah
Maryland
West Virginia
Colorado
California
Kansas
Virginia
Missouri
Kentucky
North Carolina
Tennessee
Arizona
Oklahoma
Arkansas

• Interventions to prevent alcohol-exposed
  pregnancies
• Interventions for children with FAS/ARND
• Monitoring FAS/Prenatal Alcohol Exposure
• Regional Training Centers
• State-based FAS Prevention Projects

South Carolina
New Mexico
Mississippi
Georgia
Alabama
Texas
Florida
Louisiana
Alaska
Hawaii
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Fetal Alcohol Syndrome Prevention Program

• Studies of prevalence of FAS
• Targeted media campaigns aimed at reducing
  alcohol-exposed pregnancies
• Educational intervention studies in high risk
  women
• Scientific Working Group for uniform diagnostic
  guidelines for FAS
• FAS Regional Training Centers for care providers
• Identify interventions to improve outcomes of
  children with FAS

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Impact of Developmental Disabilities

• 12 of school age children need special
  education
• Special education costs over 50 billion per year
  
• Most causes are unknown
• Families bear much of the burden

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Metropolitan Atlanta Developmental Disabilities
Program

• Monitors prevalence of mental retardation,
  cerebral palsy, autism, hearing loss, and vision
  impairment in Metro Atlanta
• Provides framework for special studies of risk
  factors and causes

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Expansion of State-Based Autism Activities
Supported by CDC
State Autism Monitoring and Research Activities
16 sites in 18 states
ADDM Network10 programs CDC CADDRE5
programs CDC
Autism and Developmental Disabilities Monitoring
(ADDM) Network Centers for Autism and
Developmental Disabilities Research and
Epidemiology (CADDRE) CDC
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Programs in Autism and Developmental Disabilities

• Monitoring programs in 18 states
• Centers for Autism Research and Epidemiology in 6
  states looking for risk factors and causes.
• CDC-Danish Collaborative Studies
• Metropolitan Atlanta Study of descriptive
  epidemiology of autism
• Metropolitan Atlanta Study of MMR vaccine and
  autism
• Improving lives of children with autism Marshall
  University

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Division of Hereditary Blood Disorders
Mission To prevent or reduce complications of
hereditary blood disorders hemophilia,
thrombophilia, thalassemia, and bleeding
clotting disorders that affect women
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Current DHBD Programs

• Hemophilia Treatment Center program
• Women with bleeding and clotting disorders
• Thrombophilia pilot program research
• Thalassemia program
• Blood safety surveillance program
• Peer education and support program

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Health Services for Bleeding and Clotting
Disorders Based on Public Health Model

• Care is specialized
• Managed by multi-disciplinary team
• Emphasize prevention rather than treatment
• Network of specialty centers allows prevention
  research
• Program is outcomes driven
• Optimal care delivery based on optimal allocation
  of resources

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Outcomes of Prevention Centers

• Relative Number of Hospitalizations

• Relative Mortality

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Division of Human Development and Disability
Promoting the health and well-being among people
of all ages with disabilities
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Child Development

• Legacy for Children Program A set of child
  development research projects sponsored by CDC
• Study targets children at risk for developmental
  delay
• Teaches the power of parenting for positive child
  development

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The Early Hearing Detection and Intervention
Program (EHDI)

• 12,000 infants born each year with hearing loss
  (3/1000)
• Age appropriate communication
• and social skills
• Before UNHS, average age of
• identification between
• 2 ½ and 3 years old.

• Promoting communication from birth

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EHDI What is it?

• 1. Screening all babies for hearing loss before
  one month of age preferably before hospital
  discharge
• 2. Conducting diagnostic audiologic evaluations
  before three months of age for all infants who do
  not pass the hearing screening
• 3. Enrolling infants and children with identified
  hearing loss in appropriate intervention
• services before six months of age.

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Percentage of Babies Screened 1993
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Percentage of Babies Screened 2001
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Attention Deficit Hyperactivity Disorder

• Most common neurobehavioral disorder of childhood
• ADHD can persist through adolescence and into
  adulthood
• Causes are currently unknown

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ADHD Funded Research

• Population-based, epidemiologic research on
  school-aged children with ADHD in 3 communities.
• Established the National Resource Center on
  Attention-Deficit/Hyperactivity Disorder through
  partnership with Children and Adults with
  Attention-Deficit/Hyperactivity Disorder (CHADD)

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Disability and Health
Prevalence of Disability

• National prevalence 17.6 (SE0.1)
• Range 8.6 (IL) - 25.5 (AZ)
• Age
• 18-44 11.0 (SE0.2)
• 45-64 22.2 (SE0.3)
• 65 30.2 (SE0.4)
• Sex
• Male 16.7 (SE0.2)
• Female 18.7 (SE0.2)

Age adjusted to 2000 U.S. Census
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Obesity BMI ³30 -
COR1.9(1.8-2.0)
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Emerging Role of CDC andDisability and Health

• Recommended that CDC provide federal leadership
• Epidemiology
• Surveillance
• Technology transfer
• Disease prevention
• Communication
• Public health coordination

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Emerging Role of CDC and Disability and Health
Goal 1 Increase Quality and Years of Healthy
Life Goal 2 Eliminate Health Disparities
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Women with DisabilitiesBarriers to Screening

• Individual perception of risk
• Pre-occupied with other health issues
• Dont know where to go
• Difficulty with positioning
• Inaccessible facilities and equipment
• Provider attitudes

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Barriers to Screening

• Difficulty with positioning
• Inaccessible facilities and equipment
• Provider attitudes

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National Information and Resource Centers

• National Limb Loss Information Center at the
  Amputee Coalition of America
• National Center on Physical Activity and
  Disability at the University of Illinois at
  Chicago
• Christopher and Dana Reeve Paralysis Resource
  Center, Springfield, NJ

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State Projects

• Develop capacity to promote the health of people
  with disabilities
• Assure access to services and programs
• Establish university and advocacy partners
• Conduct surveillance on prevalence
• Develop formal planning and HP2010 goals
• Conduct health promotion interventions

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Partnering
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Partners Enhance Our Work

• Participate in public health research and
  practice
• Disseminate information about our programs
• Educate providers, practitioners, policymakers,
  and the public about our mission and activities
• Provide leadership in identifying emerging issues

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• More information is available at
  www.cdc.gov/ncbddd

• Don Lollar
• dlollar_at_cdc.gov