Research on Trisomy 21

Current research studies

The Natural History of Down Syndrome

Individuals with Down syndrome ages 6 months to 70 years are invited to participate in this research study to help us gain a better understanding of the natural history of Down syndrome.

In this study we will track medical, neurological, and educational issues over the course of years. Developmental and cognitive assessments will also be administered to participants during their child’s regularly scheduled clinic visits.

Finally, parents and caregivers will be asked to fill out a few surveys and questionnaires regarding the participant’s behavior. There is no intervention associated with this study, and all of the information gathered will be kept completely confidential.

For more information, please contact Cassie Strawser, Research Coordinator at strawserc@email.chop.edu or 215-590-2314.

Down Syndrome Cognition Project

Individuals with Down syndrome ages 11 to 25 years are invited to participate in this research study to help us understand more about how individuals with Down syndrome learn and problem solve.

One additional visit to The Children’s Hospital of Philadelphia will be required for this study, during which participants would complete 2.5 hours of cognitive testing on a computer and parents will be asked to fill out questionnaires regarding their child’s medical history and abilities. In addition, a small blood sample will be obtained from participants and a saliva sample will be obtained from the parents. Finally, a 45-minute phone interview will be conducted with the mother of the participant.

For more information, please contact Cassie Strawser, Research Coordinator at strawserc@email.chop.edu or 215-590-2314.

The Down Syndrome Growing Up Study — Stand Up and Be Counted!

Principal Investigators:
Babette Zemel, PhD, Director, Nutrition and Growth Laboratory
Study Coordinator: Waynitra Hall, MS, CHES

Children with Down syndrome ages birth to 20 years are invited to participate in this research study to develop new growth charts for children and young adults with Down syndrome. The current trisomy 21 growth charts are outdated and may not reflect current patterns of growth in children and young adults with Down syndrome. We want to learn as much as we can so that we can improve the medical care of children and young adults with Down syndrome.

Want to learn more? Visit the Down Syndrome Growing Up Study website or contact Waynitra Hall at 215-590-2913 or via email. 

Research Sleep Study

Children with Down syndrome between the ages of 8 and 16 are needed for a study that will help us understand sleep in children with Down syndrome. Your child does not need to have sleep problems to be included in the study.

The study involves spending the night in the sleep lab, blood tests, an ultrasound of the heart (echo) and learning tests. A parent must stay with the child overnight. We offer reimbursement for expenses.

For further information, please call Mimi Carroll, study coordinator, at 215-590-3862. 

Body Composition and Heart Health Study

Children with Down syndrome between the ages of 10-20 are invited to participate in this study that will help us understand body weight in adolescents with Down syndrome, the extent to which individuals with Down syndrome are at increased risk for heart and artery disease as well as Type 2 diabetes, and how body weight affects these risks. You may be aware of the current “Growing Up” Study whose goal is to develop new growth curves for children with Down syndrome. This study will further help us understand weight, muscle mass, and fat mass in children with Down syndrome.

To learn more, please contact Divya Prasad, study coordinator, at 267-426-2778 or via e-mail at prasadd@email.chop.edu.

Reviewed on May 07, 2014