National Center on Birth Defects and Developmental Disabilities
Year End Review
December 16, 2011
National Center on Birth Defects and Developmental DisabilitiesOffice of the Director
NCBDDD 2012 Budget - Update
Salvatore J. Lucido, JD, MPAAssociate Director for Policy (Acting)
National Center on Birth Defects and Developmental DisabilitiesOffice of Policy, Planning & Evaluation
NCBDDD 2012 Budget - Update
• Consolidation Proposal
• Current Appropriations Status
• Implications for a Continuing Resolution
• Implications for FY12 Grants
Gloria Krahn, PhD, MPHDivision Director
National Center on Birth Defects and Developmental DisabilitiesDivision of Human Development and Disability
Division of Human Development and Disability
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.
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
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
Division of Blood Disorders
Althea Grant, PhDChief, Epidemiology and Surveillance Branch
National Center on Birth Defects and Developmental DisabilitiesDivision of Blood Disorders
DBD Strategic PrioritiesReduce 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
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
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”
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
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
Division of Birth Defects and Developmental Disabilities
Accomplishments and Opportunities
Cynthia Moore, MD, PhDDivision Director
National Center on Birth Defects and Developmental DisabilitiesDivision of Birth Defects and Developmental Disabilities
DBDDD’s Priorities:
Fetal Alcohol Spectrum Disorders
Autism Folic Acid Medications in Pregnancy Newborn Screening
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
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
NCBDDD’s 2011 Accomplishments
National Center on Birth Defects and Developmental DisabilitiesOffice of the Director
Coleen Boyle, PhDDirector, National Center on Birth Defects and
Developmental Disabilities
10 Years of Service Closing ReceptionNovember 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
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