The Effect of Congenital Heart Disease on Employment, Neuropsychological Outcomes, and Quality of Life in Adults with Down Syndrome

Would you like to learn more about a survey-based research study that aims to answer questions about outcomes and function in adults with Down syndrome?

Many children with Down syndrome are also born with a heart defect, or congenital heart disease. The purpose of this research study is to collect information from adults with Down syndrome and their parents (or caregivers) to answer questions about the impact that heart disease may have on outcomes in adulthood. The Pediatric Heart Network, a collaborative clinical and research center created and funded by the National Heart, Lung and Blood Institute, has funded this Internet-based survey study about medical health, employment, community participation, neurologic problems, mental health, and quality of life. 

Researchers at the Medical University of South Carolina are looking for all adults with Down syndrome, both with and without congenital heart disease, and their parents or legal guardians who would like to participate. Participation will include completing a one-time online survey that should take approximately 1-2 hours. Questions can be answered in more than one sitting. Participants will be compensated for their time. Paper copies of the research survey are available by request.

If you (the person with Down syndrome) are age 18 to 45 years old and  want  to  take part,  visit the survey site: Web Site Policy


Please  email the DS-Connect Registry Coordinator: This email address is being protected from spambots. You need JavaScript enabled to view it. if you have any questions about this study.