News and Events :: DS Research News

Congress Appropriates $1 Million for Down Syndrome Studies
December 2004

Congress appropriated $1 million in its 2005 Omnibus Appropriations bill for the initiation of two important Down syndrome research studies at the Centers for Disease Control (CDC). The first study will obtain an accurate estimate of the number of people in the United States living with Down syndrome and identify them by age and ethnic group. The second study will document the onset and course of secondary and related developmental and mental disorders in individuals with Down syndrome. The studies will be administered through the National Center on Birth Defects and Developmental Disabilities at the CDC.

DSRTF and the National Down Syndrome Society have advocated for federal funding for these studies for the past two years. They will help inform future basic research on cognition, aging and secondary conditions associated with Down syndrome.

Population data by age and ethnic group will help scientists understand why in certain ethnic groups those with Down syndrome have a higher mortality rate early in childhood. The data will also help researchers understand how premature aging affects mortality rates. The information will also help state and federal agencies, as well as non-profit groups, plan for housing, education and other services that will be needed by persons with Down syndrome in the years ahead.

Documentation of the onset and course of secondary and related developmental and mental disorders in persons with Down syndrome is also critical. A large amount of anecdotal evidence from Down syndrome clinicians suggests that the number of persons with Down syndrome who have autism or other mental disorders, such as obsessive-compulsive disorder, is increasing. Reliable data on this observation would be useful in indicating certain risk factors that may require assessment. The data would also be useful in help to understand possible associations between the incidence of Down syndrome and other disorders.