Experts discuss future of public health research on Down syndrome

Nov 7 2008

Down syndrome, the most commonly identified cause of cognitive impairment, occurs in approximately 1-in-700 births in the United States.

Additionally, nearly 80 percent of fetuses with Down syndrome are lost before birth.

The Centers for Disease Control (CDC), in partnership with the National Down Syndrome Society, convened a meeting of experts to review the current knowledge of Down syndrome, identify information gaps and develop priorities for future public health research. The results are published in the American Journal of Medical Genetics Part A. The public health research priorities identified at the meeting focused on developing a better understanding of the health problems faced by persons with Down syndrome, as well as best practices for screening and treatment of the condition.

Other important areas identified for future public health research included the better characterization of the natural history of cognition and language development, improved understanding the impact of educational and social services and supports, effects of aging in persons with Down syndrome and the reasons behind the racial and ethnic disparities seen among persons with Down syndrome.

"This new agenda will guide future public health research for Down syndrome, which will ultimately help us to learn more about this condition," says Dr. Sonja Rasmussen, senior scientist at CDC's National Center on Birth Defects and Developmental Disabilities. "Our hope is this research will improve the lives of people with Down syndrome and their families."