Research Projects

***Actively Recruiting Participants***

Down Syndrome 360 (DS360) is a nationwide research study based at Emory University. The goal of DS360 is to study all clinical conditions that occur in each unique individual with Down syndrome. This information will help answer why some individuals have more serious medical outcomes due to the extra chromosome 21.

Participation in this study will involve:

• A 45-minute phone interview with the study participant’s mom on health-related topics  
• Permission for us to collect medical records to note medical problems related to Down syndrome  
• LATER: A blood or saliva sample from the participant and their parents to obtain DNA for study – only if we do not currently have samples for your family

For participants between 6-40 years old, we will also ask caregivers to complete several written or online questionnaires that ask about the everyday skills and behavior of the participant. 

Participants will receive up to $50 for completion of all survey and interview activities. Participants will receive an additional payment for blood/saliva samples, if they are needed.

If you would like more information about DS360, please contact DS360@emory.edu.

***Actively Recruiting Participants***

The INCLUDE CDP is a long-term research program that helps researchers learn more about Down syndrome and the health conditions that often occur alongside it. Results from this program will help researchers create better ways to improve health and quality of life for people with Down syndrome and their families.

The CDP is part of the INCLUDE Project, which is a National Institutes of Health (NIH) initiative. In its role, the Down Syndrome Center at Emory is partnering with RTI International, a nonprofit research institute, to lead the Down Syndrome Clinical Cohort Coordinating Center (DS-4C). The DS-4C supports the CDP by providing overall coordination and outreach for the program.

For more information about the INCLUDE CDP, including eligibility information and frequently asked questions (FAQs), visit https://includecdp.org/.

Enrollment for these studies has ended, but data analysis is ongoing. 

An additional achievement of the following studies was the center's creation of a Data and Biological Sample Repository. The Repository houses a large collection of health data and biological samples collected from infants and children with Down syndrome.

Emory Down Syndrome Project

A multi-site, population-based, case-control study led by the Down Syndrome Center at Emory with two primary goals: (1) to find out what biological and environmental factors cause changes in how chromosome are divided, leading to an extra chromosome into an egg or sperm, and (2) to identify risk factors for Down syndrome-associated birth defects.

Study of Down Syndrome and Congenital Heart Defects

An investigation that aims to identify the genetic and environmental factors that influence the risk of congenital heart defects in people with Down syndrome.

Genetic Influences on Learning and Behavior in Individuals with Down syndrome (Cognition Project)

A large scale, multi-site project dedicated to identifying the factors, both genetic and environmental, that lead to the differences in thinking and learning seen in individuals with Down syndrome. Building a greater understanding of the systems and components involved in thinking and learning could play an important role in developing evidence-based intervention programs.