Research on Developmental Disabilities
By studying the number of people identified with a developmental disability at different points in time, we at the Centers for Disease Control and Prevention (CDC) can find out if the number is rising, dropping, or staying the same. We also can compare the number of children with developmental disabilities in different areas of the country and among different groups of people, such as girls and boys, and children in different racial and ethnic groups. This information can help direct our research into potential risk factors and causes and can help communities direct their outreach efforts to those who need it most.
The Importance of Tracking
Through CDC’s work in tracking developmental disabilities over the past 20 years, more is known about which children are more likely to have developmental disabilities, at what age they are likely to be diagnosed, and whether progress has been made in early identification of children with developmental disabilities. This is the information communities need to plan for services and understand where improvements can be made to help these children. On a national scale, CDC’s work on developmental disabilities is guiding critical research and informing programs and policies. The following are activities that CDC conducts or funds in order to learn more about developmental disabilities.
The Autism and Developmental Disabilities (ADDM) Network estimates the number of children with autism spectrum disorder (ASD) and other developmental disabilities.
Understanding Risk Factors and Causes—Research
CDC supports public health research, including studying potential causes of developmental disabilities. Both public health tracking and research efforts provide information necessary to direct prevention efforts.
CDC conducts nationally representative surveys that provide data on the health of children in the United States: the National Health and Nutrition Examination Survey (NHANES) and the National Health Interview Survey (NHIS). These surveys include information on developmental disabilities and delays.
CDC has also collaborated on the development and management of other nationally representative surveys sponsored by the Maternal and Child Bureau of the U.S. Health Resources and Services Administration: the National Survey of Children’s Health (NSCH) and the National Survey of Children with Special Health Care Needs (NSSHCN). These surveys also provide data on children’s health and development.
The CDC–Denmark Program
The CDC–Denmark Program was set up to look at many public health issues. The program highlighted the work done using Danish national public health data systems. The Danish data systems include more than 200 long-term disease and administrative registries. These systems are linked with one another. Thus, they can be used to make data sets with information on very large numbers of people. These data sets cover long periods of time. Therefore, they can be used to look at health trends and disease traits. They also can be used to study some less common risk factors or diseases in detail.
The Metropolitan Atlanta Developmental Disabilities Follow-up Study of Young Adults (Project Completed)
In the mid-1980s, CDC conducted the Metropolitan Atlanta Developmental Disabilities Study (MADDS), a study of developmental disabilities among 10-year-old children living in metropolitan Atlanta. The Metropolitan Atlanta Developmental Disabilities Follow-up Study of Young Adults contacted many of the original study participants years later, when they were young adults. They were asked questions about various subjects, such as their health, living arrangements, socialization, employment, and quality of life. This information continues to be helpful in understanding the functioning and transition of children with developmental disabilities into young adulthood.