National Center on Birth Defects and Developmental Disabilities Year End Review

1. National Center on Birth Defects and Developmental DisabilitiesYear End Review December 16, 2011 National Center on Birth Defects and Developmental Disabilities Office of the Director

2. NCBDDD 2012 Budget - Update Salvatore J. Lucido, JD, MPA Associate Director for Policy (Acting) National Center on Birth Defects and Developmental Disabilities Office of Policy, Planning & Evaluation  

3. NCBDDD 2012 Budget - Update • Consolidation Proposal • Current Appropriations Status • Implications for a Continuing Resolution • Implications for FY12 Grants

4. Division of Human Development and Disability Gloria Krahn, PhD, MPH Division Director National Center on Birth Defects and Developmental Disabilities Division of Human Development and Disability

5. DHDD Priorities • Reduce disparity in key health indicators, including obesity, among children, youth and adults with disabilities. • Improve developmental outcomes of all children. • Ensure that all newborns are screened and assessed for hearing loss and receive appropriate intervention according to established guidelines. • Identify and reduce disparities in health care access for people with disabilities. • Incorporate disability status as a demographic variable into all relevant CDC surveys, policies and practices.

6. Division of Human Development and Disability:Our Accomplishments in 2011 • Our programmatic successes: • Health disparities / Including people with disabilities • HHS policy on disability data identifiers in HHS supported surveys • CDC-wide work group to include disability populations in FOAs • New FOA for public health practice and resource centers • Early identification and child development • 97% of newborns screened for early hearing loss (> 2010) • Expanded focus on muscular dystrophy; use of cross-condition approach to apply the Life Course Model (complex conditions) • Positive parenting: Legacy for Children™ / Early Head Start

7. Division of Human Development and Disability:2012 Opportunities • Disability and Health Data System • Launching a web-based disability data system for all 50 states, Washington D.C., and 3 territories • MMWR: Child Mental Health Surveillance Report • Leading the first comprehensive look at surveillance systems and surveys that collect data on children’s mental health • HHS Action Plan to Reduce Health Disparities for People with Disabilities • Collaborating with HHS Office of Disability to document specific actions to reduce health disparities for people with disabilities • Issue briefs on disparities in disability and obesity • Understanding problems / identifying solutions for higher rates of obesity in people with disabilities compared to those without

8. Division of Blood Disorders Althea Grant, PhD Chief, Epidemiology and Surveillance Branch National Center on Birth Defects and Developmental Disabilities Division of Blood Disorders

9. DBD Strategic Priorities Reduce morbidity and mortality from blood disorders through comprehensive public health practice Strategic Priorities: • Prevent clotting disorders – Venous Thromboembolism (VTE)* • Prevent and control complications resulting from hemoglobinopathies – Sickle Cell Disease, Thalassemia* • Prevent and control complications resulting from bleeding disorders such as hemophilia and vonWillebrand Disease *NCBDDD priority

10. Reducing Hospital-Associated Venous Thromboembolism • Expert Panel Meeting (8/19/11) Prevention of Hospital-Associated VTE • VTE reporting module - National Healthcare Surveillance Network (NHSN) • Monitor occurrence of VTE among hospitalized patients • Track prevention practices in hospitals for quality performance • Collaboration with CMS and AHRQ – HHS Partnership for Patients • Full implementation - projected 2014

11. Sickle Cell Disease • RuSH • Completion of case definition and data dictionary • Legal access to data sources • Receipt of initial data from states! • Sickle Cell Disease Awareness Activities • SCD World Day, Atlanta , GA • SCD Field Event, Memphis, TN • “Public Health Webinar Series on Hemoglobinopathies”

12. Universal Data Collection System (UDC) • Evolving to be more efficient , focused, and address and monitor new and emerging needs • Formal evaluation • Partner/stakeholder meeting • Community feedback and webinars • New cooperative agreements – surveillance, research, blood safety • Research – reducing morbidity associated with inhibitor development

13. Looking Forward - 2012 • Continue promoting blood disorders as a public health issue • 2nd National Conference on Blood Disorders in Public Health - March 12-14, Atlanta • AJPM December 2011 supplement,- Blood Disorders in Public Health – Bridging the Gap • MMWR Recommendations and Reports - Recommendations/guidelines for prophylaxis in preventing HA-VTE • NHSN – VTE module • Strengthen and expand partnerships • Federal Partners - HHS Initiatives for SCD and PfP • States • Community-based organizations – MLK Center, SCDAA, others

14. Division of Birth Defects and Developmental Disabilities Accomplishments and Opportunities Cynthia Moore, MD, PhD Division Director National Center on Birth Defects and Developmental Disabilities Division of Birth Defects and Developmental Disabilities

15. DBDDD’s Priorities: • Fetal Alcohol Spectrum Disorders • Autism • Folic Acid • Medications in Pregnancy • Newborn Screening

16. Fetal Alcohol Spectrum Disorders • CHOICES: A Program for Women About Choosing Healthy Behaviors • Better characterize the rate of alcohol-exposed pregnancy: National Survey on Family Growth • Workshop to understand identification issues and risk factors influencing increases in autism spectrum disorder prevalence • Learn the Signs. Act Early. : WIC clinics in St. Louis, children’s book - Amazing Me: It’s Busy Being 3! Autism

17. Folic Acid • Corn masa flour fortification: technical assistance on safety issues, intake, and potential public health impact • Global Initiative: South East Asia and East Africa; blood folate; WHO • TRxeating for Two Initiative • Prevalence of medication use in pregnancy; Association between opioid analgesics and select birth defects; association between antiepileptic medications and birth defects • Assisting New Jersey evaluating pulse oximetry screening program Medications in Pregnancy Newborn Screening

18. NCBDDD’s 2011 Accomplishments Coleen Boyle, PhD National Center on Birth Defects and Developmental Disabilities Office of the Director Director, National Center on Birth Defects and Developmental Disabilities

21. 10 Years of Service Closing Reception November 1, 2011 -Washington, DC The Closing Reception Experience • Dramatic storytelling • Artful expressions • Inspiring video presentations • Meaningful discussions of our important work in the next 10 years Connecting with Partners • Express gratitude and appreciation to our partners “I’ve worked at CDC for over 20 years and have never seen a CDC event like this!” - Ed Hunter, Director, CDC-W

22. 10 Years of Service • Key policy relationships forged and strengthened • Healthy Beginnings: “We’ve made tremendous progress in the last 10 years and that is due in large part to NCBDDD & their partners.” – Rep. Lucille Roybal-Allard (D-CA) • Autism: Rep. Chris Smith (R-NJ) contacted NCBDDD with a request to testify before Congress on NCBDDD’s international autism activities. • CHD: Over 20 congressional hill staffers attended the highly successful event. • SCD: Rep. Steve Cohen (D-TN) and Rep. Marsha Blackburn’s (R-TN) requested more information on our sickle cell work. • Partner engagement • 18+ partner organizations sponsored and supported events • Social media • 69 Facebook posts garnering over 3M impressions & 4K “likes” • 237 tweets with over 1,500 retweets and almost 8K click throughs • 43 photos on Flickr which have received 2,381 views • Launched 7 videos on YouTube with almost 3K views