Autism Activities at CDC: The Public Health Model Act Early Region II Summit Bronx, NY March 26, 2009 Marshalyn Yeargin-Allsopp, MD Georgina Peacock, MD, MPH National Center on Birth Defects and Developmental Disabilities
Public Health Model Surveillance Research Prevention
Autism Activities at CDC Surveillance/Monitoring Address questions on the prevalence/trends Epidemiologic Research Examine risk/protective factors Prevention Learn the Signs. Act Early.
Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) Ongoing, active monitoring program since 1991 5 counties of metro Atlanta Multiple sources (educational, clinical, service sources) 5 Disabilities: Mental Retardation/ Intellectual Disability Cerebral Palsy Hearing Loss Vision Impairment Autism Spectrum Disorders (since 1996)
How do the rates of ASDs compare with other disabilities? MADDSP Rates of Developmental Disabilities (8- year-olds, 1996) Intellectual t l Disabilities 15.55 per 1,000 Autism 4.2 per 1,000 Cerebral Palsy 36 3.6 per 1000 1,000 Hearing Loss 1.4 per 1,000 Vision Impairment 1.4 per 1,000 Karapurkar-Bhasin, Brocksen, Avchen, Van Naarden Braun. Prevalence of four developmental disabilities among children aged 8 years - the Metropolitan Atlanta Developmental Disabilities Surveillance Program, 1996 and 2000. MMWR SS 2005;55;1 9.
Autism and Developmental Disabilities Monitoring (ADDM) Network Washington Montana North Dakota Minnesota Vermont Maine Oregon Nevada California Idaho Utah Wyoming Colorado South Dakota Nebraska Kansas Iowa Missouri Wisconsin Michigan Illinois Michigan Indiana Kentucky Ohio New York Pennsylvania DC West Virginia Virginia New Hampshire Massachusetts Rhode Island Connecticut New Jersey Delaware Maryland Arizona New Mexico Oklahoma Arkansas Tennessee North Carolina South Carolina Mississippi Georgia Alabama Alaska Texas Louisiana Florida U.S. Virgin Islands Hawaii Puerto Rico Guam CDC 11 ADDM Sites 2006-2010 (10+CDC) 16 ADDM Sites 2001-2006 (15 +CDC) +
Goals: Accurate and comparable population-based p estimates of the prevalence of Autism Spectrum Disorder (ASD) in selected regions of fus U.S. Describe the characteristics of children with Autism Examine trends in prevalence
Prevalence Conclusions Results from the largest US multi-site collaboration to monitor ASDs underscore that ASDs are conditions of urgent public health concern. For the majority of communities represented, ASD prevalence ranged from 5.2-7.6 per 1000 children Some variation ASD prevalence significantly lower in 1 site (AL) and higher in 1 site (NJ). Average of 1 in 150 children (range from about 1 in 100 to 1 in 300) How many children in the U.S. have an ASD? Estimated: 560,000 children between 0-21 years Centers for Disease Control and Prevention (CDC). Prevalence of Autism Spectrum Disorders --- Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002. MMWR SS 2007;56(No.SS-1).
Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Washington Montana North Dakota Minnesota Vermont Maine Oregon Nevada California Idaho Utah Wyoming Colorado South Dakota Nebraska Kansas Iowa Missouri Wisconsin Michigan Illinois Michigan Indiana Kentucky Ohio New York Pennsylvania DC West Virginia Virginia New Hampshire Massachusetts Rhode Island Connecticut New Jersey Delaware Maryland Arizona New Mexico Oklahoma Arkansas Tennessee North Carolina South Carolina Mississippi Georgia Alabama Alaska Texas Louisiana Florida U.S. Virgin Islands Hawaii Puerto Rico Guam CADDRE grantees, including Data Coordinating Center CDC, 6 th CADDRE site
Research: Study to Explore Early Development (SEED) Multi-state collaborative study to help identify factors that may put children at risk for autism spectrum disorders and other developmental disabilities. California, Colorado, Georgia, Maryland, North Carolina, Pennsylvania Approximately 2,700 children, ages 2 to 5, and their parents will be part of this study.
Study to Explore Early Development (SEED) Main research areas ASD phenotypic variation Subgrouping for etiologic analysis Infection and immune function, including autoimmunity Reproductive and hormonal features Gastrointestinal features Genetic features Sociodemographic features
Early ASD Surveillance Challenge = The median age of ASD diagnosis is 45-5 4.5-5.55 years of age (ADDM Network). Current surveillance must rely on older children to understand peak prevalence. No model for population-based surveillance of ASDs in young children in US. Goal = develop a valid way to characterize and track the population of children with an ASD in young children (under the age of 4). Long-range goal = tie population-based surveillance with efforts for early identification ( Learn the Signs. Act Early. ), screening, and link to intervention.
Model Projects for Early ASD Surveillance Response = NCBDDD issued a development RFA for FY07 to support 3 projects (CA, FL, UT) to assess the feasibility of Early ASD Surveillance. Implementation RFA funded in FY08 for 2 sites (CA, FL). UT continuing screening / surveillance efforts on smaller scale. ADDM South Carolina site received outside funding to supplement 8-year-old surveillance for 4 year olds. MA Department of Health use of Early Intervention Data to track ASDs Susan Manning presented to ADDM and Early ASD Sites in 2008.
Methods of the state sites MA Early Intervention admin classification of autism SC Multiple source records-based ADDM CA UT FL Multiple source records-based and select screening Screening in select pediatric practices Screening in multiple pediatric practices
Benefits of Early ASD surveillance Best estimate of true prevalence at very young ages Compare rates from direct assessment v. administrative methods, to see possible trends in awareness and diagnostic practices Opportunity to study validity of screening instruments and effectiveness of screening process How to increase specificity How do parents respond to screening How can communities plan and provide support Establish a cohort that can be followed over time to examine developmental course and costs of care. Provide participants p the opportunity to seek earlier intervention. Source: J. Miller
Learn the Signs. Act Early. www.cdc.gov/actearly
Learn the Signs. Act Early. Traditional health communication campaign Capacity building through the Act Early project Partnership engagement Evaluation
Communication Objectives Raise awareness of developmental milestones and early warning signs of developmental delay. Increase knowledge about the benefits of early action and early intervention. Increase parent-provider dialogue on the topic of developmental milestones and disorders. Increase early action for developmental disorders.
Target Audiences Health Care Professionals Pediatricians, family physicians, physician assistants, nurses, allied health professionals Parents of Young Children Ages 4 and younger Early Educators
Materials Flyers Poster Growth Chart Fact Sheets on Milestones and Developmental Disabilities Informational Card
Working Together Ensuring that every child reaches his or her full potential Maternal & Child Health Bureau National Center on Birth Defects & Developmental Disabilities
Capacity building CDC& HRSA Collaboration Act Early Summits Act Early Minigrants Other CDC initiatives Research Topics of Interest (RTOIs) Collaborative Research Awards (CRAs)
Thank you! www.cdc.gov/ncbddd gpeacock@cdc.gov