Genetic influences on learning and behavior in individuals with Down syndrome (Cognition Project)

Emory University is part of a nationwide study on the differences and similarities in learning abilities in among individuals with Down syndrome. This is a continuation and expansion of the pilot study started in 2006. Its purpose is to understand more about how children with Down syndrome learn and problem solve. We are also gathering information about certain medical conditions related to Down syndrome to determine how they may affect learning abilities. Finally we plan to collect DNA samples to identify genes that play a role in these learning pathways. The other sites participating in the study include: 1) Johns Hopkins University and Kennedy Krieger Institute in Baltimore, MD; 2) University of Arizona in Tucson, AZ; 3) Oregon Heath Science University in Portland OR, and 4) The Waisman Center at the University of Wisconsin in Madison, WI. We hope to expand to Children's National Medical Center in Washington, D.C. later this year. This large scale, multi-site project will have the power to identify factors, both genetic and environmental, that lead to the variation in cognitive functioning seen in individuals with Down syndrome. If we can understand the systems involved in cognition and the factors that play a critical role, we will have a higher chance of developing evidence-based intervention programs.

If you are interested in participating, you would come to Emory or one of the other sites for two testing sessions which may last up to two hours each. There will be an initial testing session followed by a second testing session 3 months later. Your child will be asked to complete cognitive tests, including standardized "IQ" assessments and non-standardized assessments of cognitive skills. Most tests will be computer-administered and resemble a computer game. Some tests will not be administered by the computer but by a researcher. In these tests your child will be asked to sort cards, point to pictures or draw. We will also ask you to complete three short written questionnaires regarding the everyday skills and behavior of your child. We may need for you to give us a small blood sample on your child which will be arranged during a routine medically necessary blood draw. We may also need to collect a small saliva sample from both parents. We will ask you to sign a form that will give us permission to obtain medical records on your child, to find out if he or she has any of the medical problems often seen in children with Down syndrome.

If you are interested enrolling your child in this study or have questions about the project, please contact:
Tracie Rosser: trosser@emory.edu or call 404-778-8474
En Espanola: esablon@genetics.emory.edu or call 404-778-8476