National Center on Birth Defects and Developmental Disabilities

Year End Review

December 16, 2011

National Center on Birth Defects and Developmental Disabilities

Office of the Director

NCBDDD 2012 Budget - Update

Salvatore J. Lucido, JD, MPAAssociate Director for Policy (Acting)

National Center on Birth Defects and Developmental Disabilities

Office 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 Disabilities

Division 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 Disabilities

Division of Blood Disorders

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

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 Disabilities

Division 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 Disabilities

Office of the Director

Coleen Boyle, PhDDirector, National Center on Birth Defects and

Developmental Disabilities

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

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