Community Perspective on Healthcare Panel: Dr. Boyle

Centers for Disease Control and Prevention

National Center on Birth Defects and Developmental Disabilities

National Center on Birth Defects and

Developmental Disabilities

Coleen Boyle, PhD, MSHygDirector

Our HistoryThe 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.

Our mission is to promote the health of babies, children and adults and to enhance the

potential for full, productive living.

Our Mission

Our Divisions

• Division of Birth Defects and Developmental Disabilities• Division of Human Development and Disability• Division of Blood Disorders

Our Efforts Impact Millions of Our Nation’s Most Vulnerable

• 1 in 33 babies is born with a birth defect

• 1 in 5 Americans has a disability

• Approximately 13% of children younger than 18 are affected by a developmental

disability

• People with sickle cell disease have a life expectancy 30 years shorter than average

• Venous Thromboembolism (VTE) is a leading cause of maternal mortality in the United

States

Public Health Approach

Surveillance

Epidemiologic Research

Intervention

Research

Translation

Implementation

Evaluation

Helping children live to the fullest by

understanding autism

• Tracking prevalence:– Autism and Developmental Disabilities Monitoring (ADDM) Network

• Estimate the number and characteristics of children with autism spectrum disorder and other developmental disabilities through population-based surveillance

• Conducting research:– Study to Explore Early Development (SEED)

• Identify factors that may put children at risk for autism spectrum disorder

• Improving early identification:– Learn the Signs. Act Early.

• Improve early identification of developmental delays and autism spectrum disorder so children and families can get the services and support they need

• Collaborating with partners– Interagency Autism Coordinating Committee (IACC)

• Inform public/private coordination of autism research efforts

CDC’s Autism Public Health Actions

Autism and Developmental Disabilities Monitoring (ADDM) Network

• Ongoing, active surveillance program since 2000 Methods modeled after the Metropolitan Atlanta Developmental

Disabilities Surveillance Program (MADDSP): multiple source record review

Largest multisite collaboration to monitor ASDs in the United States

ADDM MethodMultisource, records-based methodology

Advantages of Using the ADDM Method

• Population-based rather than administrative-based

• Gathers information on case status, co-occurring conditions, and age of diagnosis

• Collects information from multiple sources (i.e., school and health sources)

• Does not rely on previous diagnosis

• Collects information the same way using the same criteria for all children

ADDM: Autism and Developmental Disabilities Monitoring NetworkMMWR Surveillance Summaries: February 9, 2007 / 56(SS-1); December 18, 2009 / 58(SS-10); March 30, 2012 / 61(3); March 28, 2014 / 63(SS-02).

ADDM Network Estimated Autism Prevalence Among 8-Year-Old

ChildrenAll SitesSurveillance Year Birth Year Number of ADDM

Sites Reporting8-year-old Population

Number of children with Autism

Prevalenceper 1,000 Children

(Range among Sites)

2000 1992 6 187,761 1,252 6.7(4.5-9.9)

2002 1994 14 407,578 2,685 6.6(3.3-10.6)

2004 1996 8 172,335 1,376 8.0(4.6-9.8)

2006 1998 11 308,038 2,757 9.0(4.2-12.1)

2008 2000 14 337,093 3,820 11.3(4.8-21.2)

2010 2002 11 363,749 5,338 14.7(5.7-21.9)

Change in Estimated Autism Prevalence Among ADDM Network Sites

MMWR Surveillance Summaries. February 9, 2007 / 56(SS-1), 1-40; December 18, 2009 / 58(SS-10), 1-24; March 30, 2012 / 61(3);1-19; March 28, 2014 / 63(SS02);1-21.

Median Age of Earliest Autism DiagnosisChildren Aged 8 Years, ADDM Network, 2002-2010

MMWR Surveillance Summaries. February 9, 2007 / 56(SS-1), 1-40; December 18, 2009 / 58(SS-10), 1-24; March 30, 2012 / 61(3);1-19; March 28, 2014 / 63(SS02);1-21.

How Can You Use ADDM Data?

Study to Explore Early Development (SEED)• SEED is currently the largest study in the United States to help identify factors

that may put children at risk for autism and other developmental disabilities• SEED’s main research goals are:

• To help understand characteristics of autism by comparing children 2-5 years old who have autism, who have developmental problems other than autism, or who are from the general population.

• To look at genetic and environmental risk factors for autism

• Extensive data collection provides detailed information• Child and parents’ genetics • Maternal infection and immune function risk factors• Maternal hormonal risk factors• Obstetric outcomes and complications• Other maternal risk factors • e.g. medications and occupational exposures

• Child’s developmental characteristics• and co-occurring health conditions

• Progress to date • Phase 1 – Data analysis underway • 750 children with autism spectrum disorder, 750 children with

developmental delays, and 750 controls

• Phase 2 data collection underway to double the study size by 2016

To learn more, please visit www.cdc.gov/seed

Study to Explore Early Development (SEED)

Improving the health of

people with disabilities

Disability and Health Activities

• Promote inclusion of people with disabilities in CDC surveys, programs, policies and communications

• Network of 18 state Disability and Health Programs

• Health care access

• Health promotion

• Emergency preparedness

• Network of Public Health Practice and Resource Centers to reach key populations

• Other disability research

Intellectual Disabilities

• Lack of strong surveillance systems to monitor health

Intellectual and Developmental Disabilities (IDD) focus

• Lack of strong surveillance systems lead to…

• Research cooperative agreements • University of New Hampshire – examining unmet

needs in health to understand risk factors• University of Massachusetts – evaluating

promising practices with potential to reduce health disparities

• Pilot project – health surveillance • Research Triangle Institute

• Medicaid data • Using Medicaid administrative data to monitor and

characterize IDD

Intellectual and Developmental Disabilities (IDD) focus (2)

• Public Health Practice and Resource Centers• The Arc – HealthMeet®• Special Olympics – Healthy Athletes

http://www.cdc.gov/ncbddd/disabilityandhealth/national-programs.html

Expanding the Scientific and Evidence Base

Health Surveillance of People with ID

• Define ID in clinically, functionally, and operationally valid ways.

• Synthesize knowledge base, including data sources and surveillance methods.

• Extend analyses of current data sources.• Pilot state or regional demonstrations.• Develop sustainable approaches.

(Krahn, Fox, Campbell, Ramon & Jesien, 2010)

Physical activity is for everybody, every ability

• Level Bullet• Third Level

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Physical activity lowers risk of heart disease, stroke, high blood pressure, diabetes, certain cancers, and improves mental health

The 2008 Physical Activity Guidelines for Americans recommend at least 2.5 hours of moderate-intensity aerobic physical activity each week

Guidelines for all adults including those with disabilities

Can be achieved in multiple bouts of activity throughout the week lasting as little as 10 minutes at a time

Physical activity is for everybody, every ability

• Level Bullet• Third Level

Bullet

Adults with disabilities are encouraged to talk to their doctors about the types of activities that are right for them

Adults who are unable to meet the aerobic physical activity guideline should start slowly according to their abilities, increasing activity over time

AVOID INACTIVITY!

Some activity is better than none!

CDC Vital Signs - Key evidence Over 21 million adults aged 18-64 have a

disability

Only 5% reported being unable to do physical activity

Nearly half (1 in 2) of all working age adults with disabilities in the U.S. get no aerobic physical activity

Inactive adults with disabilities are 50% more likely to have cancer, diabetes, stroke, or heart disease than those who get the recommended amount

Promising news

44% of adults with disabilities who visited a doctor in the past 12 months got a physical activity recommendation

They were 82% more likely to be active at the recommended level (than inactive) compared to those who did not receive a recommendation

1. Know the Physical Activity Guidelines.

2. Ask your patients with disabilities about their physical activity.

3. Discuss barriers to physical activity.

4. Recommend physical activity options.

5. Refer your patients to resources and programs.

What can doctors and other health professionals do?

www.cdc.gov/disabilities/pa

Questions?

For more information please contact Centers for Disease Control and Prevention1600 Clifton Road NE, Atlanta, GA 30333

Telephone: 1-800-CDC-INFO (232-4636)/TTY: 1-888-232-6348Visit: www.cdc.gov | Contact CDC at: 1-800-CDC-INFO or www.cdc.gov/info

National Center on Birth Defects and Developmental Disabilities